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Lymphedema chronic ankle issues?
I've had a long struggle in the last year and a half with chronic ankle problems. It started out only as one, but it's turned into both ankles I have severe pain so much that I've ended up with injuries all over from not being able to exercise enough, and therefore causing deconditioning . I have been trying to tell any doctor I see about my ankles being swollen, and my get red and I've been casually told I have venous insufficiency. I'm having a hard time seeing a vein dr. I made to feel like there's something wrong with the way. I'm processing information that I'm hyper reactive and yet I know how my ankles look and feel and how they're changing so after my own research after all this time and where I'm coming upon lymphoma and non-pitting lymphedema when I try to do the testing on my own. The whole thing really scares me researching that the edema is non-pitting because it doesn't change in my ankles. I only gets worse with the heat and if I stay upright, so I end up lying down a lot, which makes everything worse. How can I get a good assessment diagnosis?
A lot of my paincondition as a driven psychosomatic condition so that's infuriating. I'm just trying to this group to find some support and find out how I can get a proper assessment. I'm supposed to be going to a psychosomatic rehab center in a week or so but they're not going to do assessments anything new because that's not the purpose.
I was basically everything because of this pain in the last year and sometimes I just feel like giving up. Do I have to live with this condition now because I have a severe hypersensitivity and putting anything on my skin is almost unbearable as well so idea of compression stockings seems impossible. Is there any way out of this??
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For your question how can I get a good diagnosis?
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In another discussion you started in the Chronic Pain group you mentioned that you have tried pain and treatment programs. Mayo Clinic has some information on Foot & Ankle Treatments including specialists who collaborate to provide you with the latest in advanced and innovative nonsurgical and surgical treatments - https://careinfo.mayoclinic.org/foot-and-ankle-mn.
Have you thought about seeking a second opinion or help from a teaching hospital or major health facility like Mayo Clinic?
I'm in Switzerland so difficult to get to Mayo
I'm going to see another vascular dr here though
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2 ReactionsAnyone in the Lymphedema group suffers with fave and neck lymphedema? I am seeing mostly lower extremities.
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Sorry to hear about your condition. As you explained, it sounds like you dont have a real diagnosis yet. My husband saw a vein specialist. They did an in office ultrasound to rule out DVT. Then he did 10 weeks of complete decongestive therapy- bandaging with short stretch bandages, exercise and special massage, skin care for stage 3 lymphedema.. The doctor wanted him to have more testing when the swelling went down to make sure it was just lymphedema and not another condition as well.
My sister had more of the symptoms you describe. She had a crush injury of her feet when someone not paying attention pulled a flat bed over her feet. They used to called it RSD reflex sympathetic dystrophy. Now they call it CRPS complex regional pain syndrome. She got her symptoms down to tolerable with medications and various therapies but it has been a life long condition -25 years. You may have something totally different than either of these conditions. My point is again you need a diagnosis. If you feel due to your frustration like crying when telling your caregivers about your symptoms, you should. Sometimes that is the only way to impress upon them the depth of your suffering. The vast majority of them do want to help with solutions but sometimes they just dont understand how bad a patient is feeling and the patient’s lost functionality. Even if you dont cry, saying “ i feel like crying” can be all it takes to impress upon them how desperate your deteriorated health is making you feel. Wishing you luck soon. Keep pressing until you hear definitely what it is and you have some plan of care.