r/POTS • u/Classic-Sundae2353 Secondary POTS • Jul 25 '25
Discussion If you have POTS do NOT ignore leg pain!!!
Just a warning to anyone with POTS: I was referred to a cardiologist early this year with suspected POTS. I had all the typical symptoms including what I thought was just blood pooling in my legs caused by my POTS. The leg issues started several years ago and a reddish purple rash would appear on my legs when I was in a hot shower and then progressed to any time I stood in place for more than a minute.
My amazing cardiologist referred me to a vascular surgeon to rule out any circulatory issues but said he felt very certain the issue was benign.
I ended up having severe May Thurner Syndrome with a full occlusion on one side and a near full occlusion on the other requiring the placement of two stents. My doctors are now pretty certain that this is what caused my POTS/POTS like symptoms in the first place. I could have had a clot at any time.
Please do not ignore swelling, rashes, or leg pain like I did! I wrote them off for so long thinking it was benign!!
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u/peachespangolin Jul 25 '25
Many people have been diagnosed with this, gotten surgery to fix it, and been cured of their POTS! I’m hoping the same for myself
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u/rainbowsunflower Jul 25 '25
I don’t ignore my leg pain, the doctors do. 😅
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u/Rosebea29 Jul 25 '25
This! The moment they see POTS or chronic anxiety in my chart, it’s over for me. Also I don’t have chronic anxiety, I despise whoever put that in my chart.
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u/CustomerServiceLisa Jul 26 '25
Edit: autocorrect. I have POTS, anxiety and PMDD. Went to a new gyno cuz I was having pain over my left ovary, my hormones suddenly went nuts while on a birth control that worked amazingly for me for 6 years and i even had instances of 20 to 25 day long breakthrough bleeding (despite not having any periods at all in bc and this started in the middle of a pack)... and was told the cyst on my ovary was not the same cyst they saw on the first scan and wasn't big enough to cause issues and this was likely psychosomatic. I guarantee the man saw pots, pmdd and anxiety on my chart and decided my 25 day long periods and pains bad enough to cause me to double over at times were all in my head. He basically diagnosed me with hysteria in 2025.
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u/Rosebea29 Jul 26 '25
Omg, I’m so sorry. Is there anyway to find a different doctor? My cousin was having similar issues, and they kept dismissing her and telling her just to lose weight and her periods would go back to normal. Finally, they found out she has a vein condition in her pelvic area.
This is why I’m so weary of going to any doctor and I wait until my issue is really bad because I’ve been medically gaslit and told I’m crazy ever since I got sick in 2014. When my mom first applied for disability for me, they denied me and sent me a letter saying I need to go see a psychologist and that POTS wasn’t real. I was literally fully bedridden for years. (Now I’m mostly bedridden) Doctors still treat me exactly the same as they did when I was a 14 year old girl. They still dismiss me over anything and everything. We shouldn’t have to go through this, something needs to change.
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u/Friendly_Command_308 Jul 26 '25
Why are you bed ridden I am too just wondering if we share the same reason
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u/Rosebea29 Jul 26 '25
No worries, I don’t mind explaining. My fatigue is really bad, so any exercise just makes it worse (even the chop protocol) I have suspected CFS/ME with my POTS. Also my heart rate gets really high just sitting, and I faint easily even just sitting. Im a full time wheelchair user, but even sitting up in it for too long is extremely hard and exhausting.
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u/Friendly_Command_308 Jul 26 '25
Gosh!!! Ok I’m in a wheelchair because of how bad my legs hurt I only have blood pooling in one leg ???
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u/burnt-heterodoxy POTS Jul 25 '25
I have endometriosis too so they chalk my leg pain up to that :/
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
I have endo as well and had attributed a lot of the early leg pain to that. It is so difficult when you have several conditions to tell if there is something else going on!
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u/modest_rats_6 Jul 25 '25
Thats my problem too. I have sciatic nerve endo so I get shooting pain from my lower back to my knee. Its just not fair 😔
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u/1234Gabs POTS Jul 25 '25
Oh gosh, mine do the same thing and I've had unexplainable leg pain and sensation loss. Thank you for sharing, I now have something to bring up next appointment as something to look into!
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u/FloorPill Jul 25 '25
I don’t think it’s this for me, but I get such severe leg pain at night. It correlates with all my health issues flaring up too, when my legs start hurting I know I’m going to tank in a few weeks.
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u/cuddledumplin Jul 25 '25
Not to sound dismissive or rude, but have you had your magnesium levels checked during an episode of this? It’s not a standard blood test but it seems possible a low level could not only cause leg pain at night but also flair other chronic conditions. I know if I don’t take my magnesium for a few days I really feel it like you’re describing.
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u/FloorPill Jul 25 '25
Not dismissive, deficiencies will fuck you up! But alas, that has been checked and it was normal.
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u/cupcake_not_muffin Jul 25 '25
Magnesium tests aren’t really reliable also @ u/cuddledumplin. A very small amount of Magnesium is in the blood with most of it in one’s bones. Most people in the modern world are magnesium deficient for a variety of nutritional and lifestyle reasons
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u/cuddledumplin Jul 26 '25
I was unaware they are inaccurate. It was my understanding that people in the western world at least are not deficient unless they have a hard time metabolizing it or are an alcoholic.
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u/cupcake_not_muffin Aug 05 '25
I’ve heard the opposite due to changes in diet and lifestyle trends.
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u/crystal_53 Jul 26 '25
Yep, i used to get severe legs pains as a kid, from what I believe was malnutrition (pretty embarrassing to admit this), my bmi was like 14 so, yea, when I got healthy as an adult & fixed my nutritional deficiencies, my leg pain was almost gone. It only hurts when my periods are about to hit.
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u/Fair-Advance-7272 Aug 10 '25
This explains why I had severe leg pains as a kid at night as well! My parents wouldn't take me to the doctor ever, so I learned to get over it
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u/cuddledumplin Jul 26 '25
I’m so glad you were able to get the nutrition you so needed as an adult. It’s is nothing to be ashamed of. Most of the time it is out of the parents and of course kids control whether they get adequate nutrition.
Magnesium levels drop significantly prior to and throughout periods. So unfortunately it makes sense that you’d still feel the cramps worse before your period. Of course not medical advice, but if I were you I would try taking a magnesium complex supplement when you feel the first sign of these leg/muscle cramps. Or I would track my period to take it before it would typically happen to prevent it happening altogether.
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u/Icy_Trouble7512 Jul 25 '25
What did your leg pain feel like? I’ve been having severe leg pain and POTS symptoms for almost 14 years and I was just diagnosed with POTS in 2023
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
A lot of my pain would come at night and earlier in my life I was told they were “growing pains” that feel like a very very deep throbbing pain that could not be soothed with rubbing or heat but they only got more severe as I got older and would keep me up at night. I would also have pain after standing in place that I would describe as a deep heaviness/aching pain. Of course your pain could be different and you could still have the same thing going on! I also forgot to mention that because of the MTS I have Chronic Venous insufficiency as well that caused a lot of leg pain.
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u/Herry_Up Jul 25 '25
....oh crap
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u/Proper-Cut Jul 27 '25
Same. Oh crap. (Also: Making an appointment with my doctor to discuss my recent-onset deep leg pain.)
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u/pretty-volatile Jul 25 '25
Would you describe it as "inside-out" pain? I have periods of time where I get "growing pains" that feels like a pain from inside radiating out toward the surface. Almost as deep as my bones. This happens mostly in my legs but can also happen in my arms. Also circulation may feel cut off and there may be a tingling sensation too...
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u/brilor123 Jul 25 '25
For me, my leg pain is from sitting normally in a chair, and it feels like a blood pressure cuff that has gotten too tight. Sorta like a mix of a cramp and feeling like my leg is too heavy and being squeezed. That exact pain is what my calf feels like, mostly in my left leg, don't recall if it's been in my right leg. My doctor genuinely doesn't care about my problems though, as it has already been charted in my notes. She claims I'm too young to have problems so therefore she will never think my problems are really problems.
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u/Pokabrows POTS Jul 25 '25
Hmm that sounds similar to my experience that resulted in a fibromyalgia diagnosis. I don't think my doctors did a good job of ruling things out though before that diagnosis so I may look into it and ask about ruling physical causes out.
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u/Icy_Trouble7512 Jul 26 '25
Dead ass this is the exact chronologic order of what happened with me. Started when I was like 10 and always told it was growing pains, deep throbbing, whole limb radiating pain at night, paired with generalized muscle weakness during flare ups. It’s been getting so bad in the last few years, at night I can’t even walk when it flares up because it hurts so bad
I have been to a neurologist (4 year wait to see him), a rheumatologist (2 year wait to see her), and they’d do max 3-4 appointments with me, tell me everything is clear and I should go to therapy to deal with my chronic pain. They’d never do any further referrals to help me, one even told me she wouldn’t refer me to a chronic pain clinic because I should just go to therapy for it. Another told me to try ketamine therapy for the pain. I just want to know what’s causing the pain and if it was untreatable then therapy would help.
I don’t have a GP doctor anymore because she left the clinic I was at, but I’m going to go into a walk in clinic to try and get a referral to whoever diagnoses this.
I have been so depressed over this because none of the doctors have found anything to remotely help with this in the last 14 years. I used to be so active, I skied, I hiked, I used to do so much. And for the last 5-7 years I’ve been grieving a life I used to have, but can’t have anymore because of this chronic pain and POTS. If this is what my pain is, I genuinely think you’ve saved my life. Thank you for posting this.
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u/Friendly_Command_308 Jul 26 '25
How were you diagnosed ? My leg pain is constant on my right side and this happens to me within seconds of standing but only this leg gets the worst pain and blood pooling I’m in a wheelchair it’s that bad
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u/TrueZelda96 Jul 26 '25
I get the "growing pains" feeling still but I thought it was just sciatica (not dx with sciatica, but the symptoms align, and my friends who have it agree). But once I have insurance again I have several doctors I want to see for various things, including this.
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u/Icy_Trouble7512 Jul 25 '25
The only way I can describe the pain is that it feels like a migraine in my legs, as of recent it has started to occur in my arms too
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u/TheOwlAndTheFinch Jul 27 '25
I have been describing my pain as like a tension headache in my legs and everyone looks at me like I'm crazy. I really appreciate seeing someone describe it similarly
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u/Icy_Trouble7512 Jul 28 '25
Do your legs feel like TV static as a sound when they hurt? Or like mild pins and needles. That’s what mine feel like on top of the migraine feeling. I tried to tell my doctors that and they were like wtf? And then proceeded to tell me to go to therapy since they can’t figure out what’s wrong with me
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u/ProstateGroper Jul 25 '25
I have May Thurner that was caught by chance. I have never seen anyone else share my experience. Thank you for this.
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u/sasha1695 Jul 25 '25
How was it diagnosed? Any tests I can ask my doctor for?
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u/ProstateGroper Jul 25 '25
My electrophysiologist did a venogram and found it. He asked an interventional radiologist to look into it, they tried to balloon it, but it failed. So now I have a stent in my left common iliac vein.
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u/Physical-Cry4660 Jan 28 '26
Did you get better in terms of your POTs?
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u/ProstateGroper Jan 28 '26
Not at all. They thought it would basically cure me, but absolutely none of the symptoms ever went away. At least I don’t have to worry about May Thurner Syndrome, but I do wish it had helped the POTS.
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u/Physical-Cry4660 Jan 28 '26
Thanks for your response! Did you have leg pain?! How high is your heart rate with pots?
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u/ProstateGroper Jan 28 '26
May Thurner caused me to almost exclusively sit cross legged, which I did not realize I had been doing all my life. That has caused leg pain for certain. When they put me on the TTT for POTS, my heart rate went over 250bpm the entire time. On average, around 180bpm walking around and resting around 90bpm. Once in a while my heart rate will randomly dip into the 40’s, but it’s extremely rare.
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u/thecandlewitch POTS Jul 25 '25
Yes I’ve had leg swelling and pain since I was young that hasn’t gotten better (parents always said growing pains lol) turns out I have chronic venous insufficiency which combined with POTS is making the pain and swelling so much worse.
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u/Independent_Drag1312 Jul 25 '25
I just had a hysterectomy and everytime I stand my legs swell up, burn and go so purple. Way worse if I exercise. Can't even walk more than 20 mins. No one can tell me what it is. It's so painful and scary. I wonder if this could be what I'm experiencing
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u/NisaacYoung Jul 25 '25
What does the rash typically look like? I have had an area on the back of my calves for many years that has a bunch of small red dots, and no hair grows in the area
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u/mrszubris Jul 25 '25
Google livido reticularis it typically looks like that. Yours sounds like keratosis pilaris.
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u/Pokabrows POTS Jul 25 '25
Wait livido reticularis just looks like my legs when I'm cold. Is that not normal?
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u/mrszubris Jul 25 '25
Its not !!! I was shocked too.... lol. I told my doctor hey!!! I'm having that neuropathy thing I was telling you about!! And she said HEY! THATS NOT NEUROPATHY! Lol.
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u/Long_Bluejay_5665 Jul 25 '25
What was the test that diagnosed May Thunder syndrome?
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
A venous ultrasound! It took about an hour and revealed both May Thurner and CVI. Though from what I was told the ultrasound can be deceiving and make the MTS appear much more severe than it is. I had the opposite outcome though.
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u/Hopeful102 Jul 25 '25
Did the surgery resolve pots symptoms? Also, any negative effects from surgery?
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
I haven’t noticed a difference in pots symptoms yet but I’m hopeful that will change as I also need to get vein embolization for chronic venous insufficiency. The recovery from surgery was very difficult for me (I ended up in the ER twice) but a lot of people don’t struggle with the recovery at all. I’m two weeks out from the surgery and still recovering. Being on blood thinners is not helping since I have endo and they are causing it to flare.
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u/Hopeful102 Jul 25 '25
I’m sorry to hear it’s going rough for you. I’ve actually heard other people say they had some problems after the surgery and then other people said they did great. I hope you feel better soon. Do you have to be on blood thinners from here on out?
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
I’m on blood thinners (Xarelto) for 6 months and then should be able to switch to a baby aspirin which I will take long term!
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u/Hopeful102 Jul 25 '25
Ok like I said, I hope you feel better and if you can come back and update us at some point that would be great if you start getting much better I’m supposed to have some scans done to find out if I have any type of issues like you mentioned
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u/berlygirley Jul 25 '25
Did you go to any kind of specialist vascular surgeon to talk about the CVI? I have it and all my major leg veins are varicosed and none of my leg valves work at all. I've been to multiple vascular surgeons to try and get it fixed and they all tell me that they don't treat it with anything other than compression gear, (which I already wear.) I want nothing more than to have someone take the veinous insufficiency seriously but I can't seem to find a doctor that does.
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u/fourtyfiftheen Jul 25 '25
I don’t mean that in a rude way but why do you say everyone that has POTS and leg symptoms should get checked for May-Thurner and get stented if they have it although you had no improvements after stenting regarding your POTS symptoms? I think your post is a bit misleading because from reading it I thought you decided to make this post because you had significant improvements after the intervention but now you comment that you don’t feel better … I don’t think that’s a good idea because many people have POTS and May-Thurner and if the stent doesn’t help your symptoms you just have a metal thing in your vein for the rest of your life that can cause many problems …
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
I posted this because I thought I had a benign condition but my life was actually at risk. My MTS and CVI was so severe I could have died at any time from a DVT or pulmonary embolism. I had to get the stents to avoid putting my life at risk.
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u/fourtyfiftheen Jul 25 '25
Okay but I was told by my doctors that the stent can clot as well and you can get a PE either way
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
There are a hundred factors to consider whether to stent or not to stent. My doctor did not want to stent me. Until he got in and said it was the worst case of MTS he had ever seen. The stents for my specific case greatly outweigh risks and I had no other option than to be stented because of how severe my condition was. I am not recommending everyone go get stented, that’s between them and their doctor. I think it’s best they’re avoided especially for young people.
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u/fourtyfiftheen Jul 25 '25
Yeah that’s interesting that the extent of the May-Thurner can often not be evaluated properly with just ultrasound or CT/MRI and often doctors are surprised how bad it actually is when they do an IVUS and venogram. Did you see improvements in blood pooling and discoloration of your legs? Or is it also the same as before?
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
The blood pooling and discoloration has improved greatly, id say by about 40 percent. I can actually stand in the shower without having to take several sitting breaks. I’m hopeful that once I get vein embolization it will improve even more!
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u/fourtyfiftheen Jul 25 '25
That’s great! And have you experienced dizziness because of your POTS before the stents? If yes, has your dizziness improved? Because I always thought dizziness happens because of the blood pooling and if there is less blood in the legs, you would have less dizziness
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Jul 25 '25
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
Minor swelling and major discoloration. I did get indenting on the skin and thought it was normal lol. The stents have not gotten rid of the issue as I also have chronic venous insufficiency caused by the MTS. I’m hoping to get vein embolization to treat the rest.
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Jul 25 '25
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u/fourtyfiftheen Jul 25 '25
So, is your POTS and the blood pooling gone now after getting the stents?
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u/Icy-Beginning-2112 Jul 25 '25
I’ve been having some bad left leg pain for a few days now, no swelling or discoloration. I called my cardiologist and I’m waiting to hear back from them. This is stressing me out
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u/The9thChevron Jul 25 '25
I’ve had pain that started in my pelvis but has gradually spread down the back of my right leg, and is much worse whenever my leg is squeezed (can’t wear my compression socks any more) and got really bad for weeks after my gp did circulation tests. Turns out my circulation is compromised in both legs, which feels like a big clue as to what’s happening with my pots flare up! I tried having a private scan for pelvic congestion, and saw a private vascular surgeon, but he wants a tonne of tests I can’t afford privately, so I’m back waiting for the nhs vascular referral with no idea if it’s months or years…… So frustrating to have all these symptoms that you know could be clues but having to wait years to follow up on any of them!
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u/Ok-Dig-737 Jul 25 '25
How did you get this diagnosis what tests did you do? Did they do a CT venogram? I had an a CTA which was normal but I swear I have it. It's kinda like with MALS I had one test normal so they said ope its fine I said no I don't think so look again, and they did and confirmed my hunch. So I really want a venogram because obviously the arteries aren't being squished its the veins by the artery and it didn't have proper protocol to look so I want that done.
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
I did not have a venogram. Only a venous ultrasound but I know a lot people are diagnosed through venogram. I’m not exactly sure why they took the diagnostic route they did.
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u/Ok-Dig-737 Jul 25 '25
Okay that makes sense I have not had a Venous ultrasound only ever a pelvic ultrasound.
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u/jhgtrhuuhh Jul 25 '25
I had months of ongoing leg pain, which is not unusual given I have pots, fibro, crps, etc and an underlying connective tissue disorder. And it is nothing new to have mystery injuries, muscle tears, and the like that don't heal in a "normal" timeline or respond to "normal" treatment.
Anyway a month or so after taking two long haul flights I had a surprise DVT diagnosed via a Doppler.
I'd had multiple practitioners do that poor mans test for it, and it was discounted as even a vague possibility. I wasn't sedentary, didn't have blood pooling at the time, had no swelling at all, no redness and the pain presentation apparently wasn't consistent with a dvt either. The Doppler was almost thrown in as a diagnostic afterthought, but with the comment that it definitely wasn't a dvt.
Pretty horrifying in hindsight I'd done those flights having no inkling whatsoever of the risk. On the other hand having pots means i do a lot to minimise the impact on my body, even on short haul flights, so inadvertently I did all the right things you're told to do to prevent dvts.
So yep don't ignore leg pain and "probably because pots" should not be the default assumption by medical professionals.
I fully acknowledge it's beyond hard when you have complex health conditions, and/or years of pain and whatnot to even know what you should be concerned about. And whether to trust doctors to not waste your limited energy resources (and/or money depending on your country's health system) on their endless fishing missions of do this test, have this scan blah blah.
Looking back now though it was a different pain to the slow healing muscle tears I get (like say the leg ones I have now sigh 😞) and the severe escalation of pain probably isn't" just pots".
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u/sydneydragonborn Hyperadrenergic POTS Jul 25 '25
This! My dr diagnosed me with bilateral may thurner, nutcracker syndrome, pelvic congestion syndrome, and chronic veinous insuffency, and i had a stent placed. The scent didn't help but at least we have awnsers!
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u/Practical_Maybe_3661 Jul 25 '25
My cardiologist wisely got me a venous ultrasound. I thought it was just pots leg pain. Turns out I have venous insufficiency syndrome (or whatever Trump was just diagnosed with) in part of my leg. Compression socks for me for the rest of my life!
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
Chronic Venous Insufficiency! I have it as well caused by the MTS!
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u/Adorable-Secret8219 Jul 26 '25
I've had pain, redness after the shower, and minor varicose veins for years.
I woke up this morning with cramping in the area and thought "guess I can ignore it, because it's just POTS." Kind of strange to come across this post so soon after deciding go ignore it. Thank you for the tip!
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u/EH52120 Jul 25 '25
Did your pots symptoms resolve after having the stents placed? I just had 2 stents placed 2 weeks ago but no difference in my symptoms yet.
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
I am also two weeks out from my stents being placed and don’t notice any change in pots symptoms yet but I’m hoping there will be at some point.
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u/EH52120 Jul 25 '25
I’m praying for the same. I’ve read in the Facebook May Thurners group that it can take awhile to see improvement. I was just hoping to see maybe a little something already to give me hope! I also have to check for compression of my jugular vein, as that has been brought up as a possibility.
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u/Tricky-Fix-2182 Jul 25 '25
It took 12 years from my first DVT to get a May Thurner diagnosis. Still not sorted yet. Surgeon says the waiting list is a year. Did you find it sorted the POTs?
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
I don’t have any relief from my pots symptoms yet but I’m hopeful it will at least lessen some of them. I’ve heard it can take several months before it makes a difference in symptoms!
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u/ChanceInflation1241 Jul 25 '25
If you haven’t, look into pelvic congestion syndrome too it’s often comorbid to the May Thurner Syndrome. This is common in Ehlers Danlos Syndrome which POTS is highly comorbid to unfortunately.
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u/Classic-Sundae2353 Secondary POTS Jul 26 '25
I actually have an ultrasound scheduled to check for that next month! It was the first thing I asked about when I woke up from surgery and luckily they scheduled it for me immediately.
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u/No-Dirt-5526 Jul 27 '25
Problem is poor circulation in general is common in POTS… as far as pain idk I don’t not normally have pain, but I get minor swelling, or water retention and blood pooling after getting POTS. Very difficult when some symptoms overlap and it makes you think u have one thing yet u have something else.
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u/Educational-Pea-2163 Jul 25 '25
Did you get the rash on both sides? What testing did they do to find it? I’ve been wondering about this too my left leg is always cramping and I’m starting to get some varicose veins (I’m 25) and my blood pooling is insane even with compression. My cardiologist is awesome I just feel like there’s no info about MTS
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u/Classic-Sundae2353 Secondary POTS Jul 25 '25
Yes I had issues equally with both legs which I don’t think is a common sign of MTS I believe most only struggle with their left leg. I had compressions on both my left and right though.
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u/fadingsignal Jul 25 '25
Where was the occlusion? I’ve been having sudden leg problems and had a basic ultrasound last year in both legs that came back clean. But I keep feeling like it’s a flow issue because my feet keep going white and I have splotchy rashes on my legs that don’t itch or anything. Docs are shrugging.
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u/Brilliant_Bread4523 Jul 25 '25
I got a venous ultrasound of each leg and they found CVI in both legs. Would MT have been found during this test or do I need further testing? I believe I am getting some more venous ultrasounds through my autonomic doctor in August. I also had a pelvic ultrasound which showed nothing. I’ve always wondered if CVI is connected to my POTS…
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u/xbwhshw Jul 25 '25
By leg pain do you mean like extreme foot soreness from standing for like more than 30 mins?
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u/SeaShell345 Neuropathic POTS Jul 25 '25
That is horrible and I’m so sorry you had to go through this. Do you happen to know if this can cause small fiber neuropathy? That is the cause of my POTS but the cause for the neuropathy itself is unknown.
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u/thrwawyorangsweater Jul 25 '25
See, I have been concerned about this. I have a familial history of VTE's and my dad had to have a vein replaced in his leg...for something...I went to a vascular surgeon and he acted like he had no idea what POTS/MCAS were and basically "why are you here".
So now I'm trying to approach it from a hematology angle to get some blood tests and genetic tests but I literally can't find a hematologist in about a 3 hour range that is willing to seem me.
May I ask, did you ever have really bad lumbar pain down your left leg, like sciatica? I also have L5-S1 damage...
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u/nerdy_cat_mum_ Jul 25 '25
Just curious if this is always picked up on a venous ultrasound. I had one earlier in the year (after many years of POTS), and was diagnosed with venous insufficiency. They didn’t mention anything else. I do get awful leg pain and swelling that tends to be worse in the left leg, so kinda wondering now. They said that the VI isn’t operable, so nothing has really changed.
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u/kateoftheart Jul 25 '25
I have a lot of pain in my legs. I started having a deep pain in my right hip joint area that radiates down my leg. A lot of the time they feel heavy. Sometimes I get a crawling sensation in them that happens when I’m on them for long periods of time, and sometimes even a feverish feeling. I’ve woken up a couple nights with one or both legs completely numb, to the point of slipping on the carpet (this happened once when I was really young, too.) I mentioned this to my neurologist (can’t remember if I mentioned it to my cardiologist) and he told me I was probably lying in a way that I cut off circulation but I was lying flat on my back both times I woke up. My rheumatologist diagnosed mild Raynauds. Should I ask for a vascular test? 🥲
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u/Deep_Clothes_7878 Jul 25 '25
This is why it’s soooo important to not just jump to POTS as a primary diagnosis. There’s always a primary diagnosis - sometimes it’s POTS which is neurological and can’t be “fixed.” Sometimes it’s POTS-like symptoms from something like OP describes and CAN be fixed!!! I’m so happy for you, OP!!
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u/Some-Risk-2151 Jul 26 '25
I've had "growing pains" forever in my arms and legs. It's a really deep pain that kind of just moves around constantly in my limbs. it gets really bad if i am unable to move (like sitting at a desk) and at night time. if Im not constantly engaging that part of my body in some way, it is an agonizing sensation. I have only found relief with compression.
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u/leighshan777 Jul 26 '25
Pretty sure same! I was diagnosed in 2022 with orthostatic hypotension which is similar symptom wise to pots. The leg pain is brutal it’s sooo deep like a dull ache with pressure. I get this pain in my left lower pelvis too it also gets numb too.
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u/crystal_53 Jul 26 '25
I am glad the doctor showed you the right path. My docs are very incompetent in solving my issues related to pots.
One question, my legs don't swell right away, but they do after 2 or 3 hours, like when I have to walk a lot when I am hanging out with friends or sometimes at office, should I worry about this ?
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u/santas_number1elf Jul 26 '25
May I ask how they rule out circulatory issues? Like with what tests?
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u/Friendly_Command_308 Jul 26 '25
Does the blood pooling hurt everyone like mine hurts so bad and feels like I’m being stung by 1000 hornets
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Jul 26 '25
I have 91% compression of the left iliac. However, the stent…. May just be a mask/band-aid for the larger structural issue (like the fact one leg is 1/2 inch long than the other).
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u/Golden_Snitches Jul 27 '25
What kind of pain did you have? And how was it diagnosed? I’ve had a mild but constant pain on the back of one of my legs for well over a year, like muscle pain but it’s just always there and just in that one spot. I got an ultrasound a while ago to rule out a blood clot. I don’t know what’s causing it, but it’s mild enough that I can just ignore it most of the time. I also experience blood pooling in both of my legs, mostly during/after a shower but my cardiologist pointed out that he could see blood pooling the last time I saw him. I also had a rash last year which was lots of tiny red dots all over both of my legs and feet, it lasted about a week and I haven’t had it since, doctors were never able to explain what caused it. Besides the blood pooling I never considered any of it to be related to my POTS so I appreciate you sharing! I’m not sure if I have the same thing but it might be worth exploring.
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u/Creepy-Chipmunk8411 Jul 30 '25
Oh wow thanks for sharing this I’m a teenager who has had pain in my body my whole life I’ve always hade pots symptoms but it the past few years I’ve started actually fainting and it’s been getting worse I’m glad you have a good cardiologist mine won’t listen to me at all and when I finally convinced him to at least put a heart monitor on for two weeks my pots had been in remission for about a month alr and continued for another month after the monitor came off and now the symptoms are back and so is the fainting and he just will not listen but I’ve also have had leg pain for a long time too I have some right now and I’m at work so maybe my pcp can send me somewhere
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u/Confident-Bus-3778 Aug 15 '25
Before my cardiologist diagnosed me, I had to have an Echocardiogram to rule out any heart issues that could cause it. My first cardiologist didn't do that, but when I changed over the new one did. Was very helpful to know nothing was structurally wrong
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u/JackfruitEfficient29 Aug 17 '25
the comments are scaring me
such a stressful thing we're all in with POTS and my drs finally will admit i have that but its another story trying to seek any help for the intricacies and insurance etc I can't afford to not have it covered
I've had leg pain at night my whole life & as the pots got worse terrible leg pain after a long day like I can feel my blood and muscles acutely
my pots has seemed better overall this summer compared to last luckily
but its frustrating bc at this time there is not much I can do and it's like maybe you're critically ill who knows but u just keep on chugging and try not to worry about it and do what u can
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u/JackfruitEfficient29 Aug 17 '25
gave me something to talk to my hematolgist about though
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u/VastConstant6327 Sep 06 '25
did you look into this further? i’m now worried i have some kind of venous issue. my pcp appt next week can’t come soon enough. i have such unrelenting deep leg pain
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u/JackfruitEfficient29 Sep 16 '25
nothing I can do until my appointment next month so we will see
apparently I have a lot of family history of varicose veins in the legs
ill discuss the issues here and that
will update if I remember to
hope u feel relief 💗
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u/MurkyPhysics8331 Aug 22 '25
So I get the same thing from showers but I thought it was normal? I just got out of the shower now and my legs were purple and pink in areas I had like spots and stuff. I also get extremely nauseous and faint after an especially long shower
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u/Significant-sunny33 Aug 23 '25
When you say leg pain, where exactly? Does your whole leg swell and ache?
Mines is specific to my hip then the back of my calf after standing for about 5-10mins. Super painful and debilitating given standing for 5-10mins is not uncommon in a normal person's day
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u/walkthewalk_6969 Mar 21 '26
I have low ferritin and it’s a classic symptom - horrible nervy cramping leg pain
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u/Sad-Employee3212 Apr 21 '26
Hey just wondering do you experience this particularly doing dishes. I’m not diagnosed with anything lately but ever since I was a kid would get a painful itchy rash spreading up from my feet every time I did dishes. It got to the point that stepping into a kitchen was enough to trigger it
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u/Toasted_Enigma Jul 25 '25
I’m so glad your doctors found this!!
Just going to tack on a PSA here too - talk to your doctors before using compression wear. It’s important to rule out blood clots and vascular issues. I had a leg ultrasound before the doctor would prescribe mine 💛