u/Better-Company-4296

I am a 34 year old woman from Nebraska. The past several years I have struggled with my right leg. I have had multiple surgeries, years of PT/OT, I’m on dozens of medications, full HKAFO bracing, tens/nmes, compression therapy, constant elevation, etc. This has lead me to starting the process of requesting an elective above knee amputation of the right leg. For a long time that leg has had no motor or sensory function, chronic recurring edema, chronic recurring venous ulcers, intense chronic nerve pain, instability from Hypermobile Ehlers Danlos, and most recently in 2026 I was diagnosed with CRPS in that leg as well as C5/C6 venous insufficiency in that leg after a duplex scan. I’ve been in a wheelchair since 2023. I have sat down when showering for years and I spend the majority of my time bed-bound with my leg elevated above my heart to try and reduce symptoms. I’m currently waiting on an appointment with a Physical Medicine and Rehabilitation after being referred by a prosthetist after an evaluation.

Lately the discoloration in my leg has progressed. It changes colors extremely rapidly anytime it is not elevated above my heart. The nerve pain increases significantly anytime my leg is down also. I’ve been on the max dose of gabapentin, lyrica, and Lasix for quite some time as well as cycles of antibiotics for the ulcerative sores on my legs. The color change in my leg used to take 10 minutes or so of being below my heart but in the past few weeks it’s taken seconds. The discoloration starts just above the kneecap and goes all the way down to the toes.

My question is, how would a person know if the worsening color change and other symptoms is due to a worsening of the CRPS or if it is a worsening of the venous insufficiency? The symptoms of the two seem to have some overlap and I just wanted to see if anyone else here had one of these diagnoses, or maybe both and could give me some insight. It’s kind of hard to get to the right specialist at times so if anyone has any experience or knowledge on which issue may be the worsening/contributing factor it may help me know which specialist to bug about the issue. The pain has been excruciating lately, especially when the leg is below my heart. It just feels like I’m being stung by a million bees and since I don’t have surface sensation in that leg rubbing it or massaging it doesn’t do anything and sometimes the pressure makes it so much worse.

I’ve attached some photos of the discoloration in case anyone knows what the CRPS discoloration looks like vs venous insufficiency. I know it’s kinda a shot in the dark but I was hoping someone may have some experience here.

I am a 34 year old woman from Nebraska. The past several years I have struggled with my right leg. I have had multiple surgeries, years of PT/OT, I’m on dozens of medications, full HKAFO bracing, tens/nmes, compression therapy, constant elevation, etc. This has lead me to starting the process of requesting an elective above knee amputation of the right leg. For a long time that leg has had no motor or sensory function, chronic recurring edema, chronic recurring venous ulcers, intense chronic nerve pain, instability from Hypermobile Ehlers Danlos, and most recently in 2026 I was diagnosed with CRPS in that leg as well as C5/C6 venous insufficiency in that leg after a duplex scan. I’ve been in a wheelchair since 2023. I have sat down when showering for years and I spend the majority of my time bed-bound with my leg elevated above my heart to try and reduce symptoms. I’m currently waiting on an appointment with a Physical Medicine and Rehabilitation after being referred by a prosthetist after an evaluation.

Lately the discoloration in my leg has progressed. It changes colors extremely rapidly anytime it is not elevated above my heart. The nerve pain increases significantly anytime my leg is down also. I’ve been on the max dose of gabapentin, lyrica, and Lasix for quite some time as well as cycles of antibiotics for the ulcerative sores on my legs. The color change in my leg used to take 10 minutes or so of being below my heart but in the past few weeks it’s taken seconds. The discoloration starts just above the kneecap and goes all the way down to the toes.

My question is, how would a person know if the worsening color change and other symptoms is due to a worsening of the CRPS or if it is a worsening of the venous insufficiency? The symptoms of the two seem to have some overlap and I just wanted to see if anyone else here had one of these diagnoses, or maybe both and could give me some insight. It’s kind of hard to get to the right specialist at times so if anyone has any experience or knowledge on which issue may be the worsening/contributing factor it may help me know which specialist to bug about the issue. The pain has been excruciating lately, especially when the leg is below my heart. It just feels like I’m being stung by a million bees and since I don’t have surface sensation in that leg rubbing it or massaging it doesn’t do anything and sometimes the pressure makes it so much worse.

I’ve attached some photos of the discoloration in case anyone knows what the CRPS discoloration looks like vs venous insufficiency. I know it’s kinda a shot in the dark but I was hoping someone may have some experience here. I know I’ve interacted with others here who have been approaching the decision of amputation or have had amputations due to similar circumstances so I thought there was a chance someone here would have some personal experience or insight