23F, 5'8", 305lbs (I was previously 190lbs, but have gained a lot in the past year due to medication and lack of activity).

Medications: gabapentin, mirtazapine, pantoprazole

Symptoms: bilateral swelling, pain (burning, stabbing, tingling), discoloration, temperature changes. Sometimes my feet are red and hot to the touch, other times they're purple and cold. Sometimes one foot is red/hot and one is purple/cold. Heat makes the pain 100x worse, cold is the only thing that somewhat helps. Photos: https://imgur.com/a/ONHrRar

In August 2020, I started having pain in my feet. It just started out of nowhere one day and... never went away. I went to my PCP several times and they checked for diabetes, thyroid problems, lupus, arthritis, and a host of other things. Everything came back negative. By November 2020, I could barely walk. PCP referred me to a podiatrist, and the podiatrist did x-rays and bloodwork (both normal)and gave me a medrol pack. Medrol pack did nothing at all so they referred me to a rheumatologist.

While I was waiting to see the rheumatologist, I developed blisters on my feet and within days my the tops of my feet were covered in wounds. My feet were extremely swollen and I was in so much pain that I couldn't stand up, or even move my feet at all, without crying. I went to the ER and found out that I had three blood clots (non occlusive). Left popliteal, right popliteal, and right superficial femoral. I also had sepsis and spent a few days in the hospital being treated with antibiotics and heparin. Went home from the hospital on Eliquis and was told that the pain would start improving once the clots were gone, but it didn't. It kept getting worse. My feet would alternate between being bright red and warm to the touch, or purple and cold. They were swollen and stiff, and burned intensely.

They thought it might be a cardiac problem, so I saw a cardiologist. Several EKGs, a week long holter monitor, and an echocardiogram were all unremarkable. Saw a hematologist and they tested for clotting disorders (negative). I did find out I was severely anemic though, and I was treat with iron infusions because I can't tolerate iron pills. I also saw 3 more podiatrists, a vascular surgeon who all said they had no idea what was wrong. Saw a different vascular specialist in February 2021 and they did venous and arterial ultrasounds, which showed that the clots I had before were all gone. There were no other problems as far as they could tell, though. They also referred me to a rhematologist (I never got a chance to see the rheum in November because I was hospitalized and things were chaotic after that), and the rheumatologist tested for dozens and dozens of autoimmune conditions, clotting disorders, etc. It all came back negative.

Then, in April 2021, I saw a pain management doctor and was diagnosed with Complex Regional Pain Syndrome Type I. They started me on a fairly high dose of gabapentin (600mg 3x/day), which helped a lot. I also started getting sympathetic nerve blocks and saw a lot of improvement. My pain decreased a lot, the swelling went down (not completely, but it was better), and the color improved. After a few nerve blocks, my feet looked normal again! They weren't all red and purple anymore, and the dry skin on my feet that I had been struggling with for months finally went away. I was also able to start walking again and no longer have to use a wheelchair. Unfortunately I had to stop doing the nerve blocks because my insurance won't approve any more. I'm working very hard to maintain the level of activity though, since I don't want to end up needing the wheelchair again.

Pain management wanted to try radiofrequency ablation, which I did in November 2021. It didn't help at all. This is when pain management started talking about trying a spinal cord stimulator. However, they wanted me to check in with vascular one more time to REALLY make sure nothing is going on before I get a spinal cord stimulator.

Vascular doesn't think I have complex regional pain syndrome. So they did more ultrasounds (normal), then sent me to get a CT angiogram/venogram. The CT was unremarkable, but the vascular doctor became convinced that the problem is with my veins and wanted to do a venogram. I got the venogram today and the results were... strange? They saw a few spots where the vein looked to be compressed, but when I inhaled, the vein expanded (much more than what's considered normal). So the vein is compressed.. except when I breathe? Because of this, they were unable to place a stent since there's no way it would have stayed in place. I also heard "aneurysm" and "CVST" thrown around a lot when they were doing the venogram, which kind of scares me but they didn't elaborate any further.

From what I understand, there are quite a few abnormalities but they have no idea why/where these problems came from. They did diagnose me with lymphedema and want me to start exercising more and also get fitted for a Flexitouch device. I'm quite nervous about this because I've tried compression stockings before (even got prescription ones) and they made my pain and swelling significantly worse. Vascular doctor is also going to get in touch with some other surgeons and ask what they think.

So... does anyone have any idea what might be causing my symptoms, or what could cause the vein problems? Do I really have lymphedema, or is complex regional pain syndrome causing all my problems? Help, I'm completely exhausted and just want to know what's wrong with me.