I am my wits end. I recently am in remission from Hodgkin's lymphoma since November. I went through 4 rounds of ABVD chemo and 14 sessions of radiation. All my disease was mediastinal (in my chest). I suffered from nerve pain from the vinblastine which seems to have gotten a little better since stopping treatment. I recently started having bad symptoms, which have started getting to where it hurts my daily living around January. It started with raynauds. My hands and fingers get black. I am not exaggerating, BLACK. Then the pain in my joints and allodynia, which is a horrible sunburn like pain that makes my clothes hurt. Then I started having episodes where I'd get lightheaded, my heart would race, blurry vision with grip weakness and trouble swallowing saliva. They last around 10 minutes. I went to urgent care where they took my blood pressure and heart rate laying down, sitting up, and standing.
Heart rate laying down-- 70
Sitting-- 80
Standing-- 115
Which turned out to be PoTs syndrome.
Raynauds was diagnosed by my rheumatologist. I have had EVERY rhuematological blood test ran and everything is normal. CT, X-ray, and PET scan are all clear. EKG normal. No blood clot, no peripheral neuropathy besides carple tunnel on my left side. Nothing. I don't know what to do. I'm suffering and I have NO answers. Doctors told me for two years I was crazy until they found my cancer. I feel like now I am going through the same thing all over again. Any thoughts or suggestions would be appreciated!!

Symptoms

Raynauds--severe, whole hand turns black
Increased heart rate (30 bpm)/ standing-- PoTS syndrome
Tingling both hands
Trouble swallowing
Joint pain
Lightheadedness-- during 'episodes'
Palpitations--during 'episodes'
Grip weakness
Allodynia that moves (arms, chest, ribs)
Bowel urgency
Sores on scalp
Sores in mouth sometimes

I've seen my oncologist, a neurologist, and a rhuematologist. I've had urine, blood, nerve, cardiac, and imaging done. What could be going on?!

Welcome Ahadley.

I have POTS too and many of your symptoms are from that. IT's possible the lymphoma or chemo triggered it, but that's hard to know. Ask for a Tilt Table Test for diagnosis of POTS.
For info/support, look up Dysautonomia International.
Best of luck.

You should post this on the peripheral neuropathy board. You could very well have chemo induced PN/SFN. There are others on that board who have that experience.