Leg pain when standing

[Colleen]

@libby now that we can comment again I hope members will jump in and discuss. How are you doing? Any improvement?

[Alfred Gronroos]

@libby, Hi from sunny AZ. I have serious leg pain when standing for a few minutes. I do have peripheral neuropathy especially active in left leg. My left leg swelled up with edema about 5 years ago and I mean big. They did an ultra sound and no blockage found. Had MRIs, cat scans, x-rays, nothing doctors found. I just had three epidermal steroid shots which did relieve some of the pain in my legs. Going to get more spinal shots but test shots are Jan-Feb and the real shots in June -July. So it looks like months of pain. Besides the pain my legs do not function normal- I walk like a zombie which I will be someday, hopefully not soon. I have also tried compression socks – no real idea if they work. My neurologist prescribed Meloxican for pain – keeps pain less than a ten. I have had heart checked – given water pills, taken for a year now. I had stand up jobs most of my working career – is this catching up with me? Libby sorry but not a big help, just a whiner.Good luck finding the right doctor. Be safe. Al

[Colleen]

@alfredjohn you are not a whiner. A large part of these forums and helping each other feel less alone with PH, it’s symptoms and treatments side-effects. Remind us in Jan.-Feb. when you are going in for your spinal shots so we can offer you support. They don’t sound like a lot of fun to me. Do they at least help?

[jen-cueva]

Hi @libby, I am just following up to see if this leg pain has resolved. If so, what helped you? If not, are they still doing tests?

[Libby]

Hi Jen – They are not doing any more tests. They chalked it up to me just having heart problems. LOL they were thinking it was a narrowing of veins in my legs which I never thought that was it. I thought it was just a sign of my heart condition getting worse. In the colder months I’ve found my leg pain has gone away. I think that it was the extreme heat of last summer making my feet swell a bit that must have been causing it.

[jen-cueva]

Thanks, @libby, for the update. Are you still working in the dental clinic during the pandemic?

My legs feel heavy, like lead is what I have described it. This happens when I am on my feet for long periods. The heat can certainly do that.

Years ago, we went to Lake Havasu, AZ. It was not humid, dry heat to breathe better, but I swelled up like a pufferfish from the extreme heat. In the summers here, my fluid retention is worse.

I have no answers, but I know that if I move my legs a bit, massage them gently, and put them up as I can is helpful. I wish I had more answers for you.

[Libby]

Yes I still work at the dental clinic. I’m on my feet almost 10 hours at a time. We had record heat of 110 when I started so that probably explains it. Lol

[mike bennett]

Hi, Libby

Are you on any medication for PH? I’ve been on IV Remodulin for years (and SubQ Remo before that), and I have incredible foot & leg pain. And the more I’m on my feet, the worse it gets. My doc – Nick Hill in Boston, who’s a great one – says that Remo can cause foot & joint pain in some patients. They don’t know why it happens, but it happens in enough patients that it’s an acknowledged side effect. Unfortunately, there isn’t a real ‘fix’ for it, though different people have had success with different meds.

[jen-cueva]

Excellent question, @mikebennett. Those statements and side effects from the Remo sadly cause those issues. Also, my Uptravi does, too. When I took orenitram, it was something that I struggled with, too.

I use rubs, sprays, warm soaks, a heated blanket, and putting my feet up to help. Sadly, there are no other answers; it seems just a side effect of many of our PH treatments.

Thanks for sharing, @mikebennett; I wish I could make it all go away. I can only imagine the IV and SubQ would be even more prominent in most.

[Colleen]

This is a problem for PH patients of all ages. A mom in a pediatric group I belong to asked if anyone else have kids whose legs turn purple when they stand for a few minutes? The answer was yes, followed by mentions of discomfort if standing for longer than 5 minutes.

[jen-cueva]

Thanks for sharing that, @colleensteele. I knew a few kids with PH who I have also heard that. I think most tend to think the symptoms in kids are different. But, I have found that we adults have much in common with the young heroes. They are so inspiring, the kids.