Okay, me being a relative newbie here, could someone explain what PEA is???
Chronic pain, Lung and airway disorders, Mental health disorders, Neurology (brain and nervous system)
It's hard to be active when you are in pain, intermittent or constant. I have been trying to get about more often and the pain in my feet seems a bit better. I am not yet at the stage of taking gabapentin but will keep that in mind. Part of my neuropathy is that the nerves sometimes are not receiving any stimulation. This might explain the pain in my shoulders that I don't notice until it's really sore. I have some balance issues and am trying to walk more. I miss walking, but I have fallen in the past and that scares me. I am only 60 and don't want to end up in the hospital due to a fall. I take lots of calcium for my bones and know that walking will help strengthen that too. Just had to vent to those who understand the struggle daily. My husband is blessed not to have this. All my best to those who struggle with pain, getting around and just plain all the stuff that comes along with the neuropathy. Thanks for being here to listen to my ranting.
@gabrielm, I understand your fears. About 2 years ago, I started having shortness of breath. My doctor was dismissive saying it's because of my weight and lose some weight, get more exercise and it would go away. I also have arthritis in my knees (have for a long time, even before weight gain). My husband I were looking for a cardiologist to see to have myself evaluated when I fell from weakness in my knees and having difficulty breathing. An ambulance came, gave me a shot of heparin, oxygen and rushed to the ER. Well, they found a DVT (deep vein thrombosis) in my femur and the right side of my heart was enlarged…two Massive Pulmonary Embolism at the entrance to my heart … the massive embolisms were 2×3 cm and 4x6cm. The hospital had never seen PEs so huge. I spent a week in the hospital. They were able to break up the PEs, but subsequently I still have multiple clots in my lungs and am on blood thinners for life. Subsequently I see a Pulmonologist and Cardiologist twice a year. So far after numerous blood tests recommended by a hematologist they have found no cause. Don't let doctors dictate when you know there is a problem. If I had listened to my own GP I would be dead now that is a fact. I am considering a new GP as a result.
I was sort of getting my hopes up when my husband and my doctor tried to convince me something I knew wasn't true … that there was any medication I could take, or therapy or surgery. So there was a bit of a let down when the neurologists looked me in the eye and said,
"I wish I could say your low Vitamin D levels were the cause, but I can't" I just know things are going to get worse and just trying to cope as best I can. I also deal with Major Depressive Disorder so this could be an issue of worsening down the road, but for now I just deal with what is before me. Sometimes I just cry, a nice release of tension, or go to bed early, or do something I can still do … like play video games. While the neuropathy started in my feet, it is also now in my right hand. When I rest my hand on hard surfaces it hurts, but fabrics are comfortable, so I sometimes wear a compression glove to help with that. I don't mind sharing, I find it helps the anxiety and depression a little … Ask me anything, if I can help I will try. A friend is anyone who is good to you.
You don't have to feel sorry for ranting. It is very helpful to you. While we all have different levels of neuropathy and pain, we are all here to support, listen and care about you when others seem to not do so. All my very, very best to you to find the answers you are seeking. By the way, I am very pro-active as well. My husband is a retired research scientist and we both agree, science just really isn't a science anymore.
I am so sorry for your pain. While I don't have the burning pain all the time, I do have it occasionally and have resorted to using a fan to keep them feeling cooler. And when that fails, I often use a cold water bath to soak them. It usually helps me get to sleep. I don't know if any of those will work, but I hope so.
My diagnosis is Generalized Peripheral Neuropathy. I am here because of my neuropathy starting in my feet and moving up my legs. To help my feet, I did some research on sneakers (running shoes) with a wide toe box and added arch support. I have very flat feet. They are orthotic friendly. I currently use Brooks Adrenaline GTS18 in a Women's 11XWide. I love them. Super comfortable, great support. Not too expensive if you are willing to look. I found mine for under 90 dollars. My neuropathy started about 4 years ago after a car accident. I was pretty sure there was nothing they could do for me (based on my own research and reading), but my primary care doctor disagreed with me and recommended a neurologist. Well after she ran blood work and a battery of tests, guess what?! There really is nothing she can do to help me. She can't find a specific cause but recommended extra Vitamin D, and to try some Alpha Lipoic Acid vitamin supplements as there is research to show it can help some people. But according to the nerve conduction test it is also in my arms and legs on BOTH sides. So far, not my torso. But the neurologist will see me every 6months to monitor me. So I take 600 mg of the ALA per day. Can't walk barefoot outside anymore, it's like walking on glass to me. My feet have little feeling in them except occasional pain and burning. I relieve the burning pain by focusing a fan on it at night. Helps a lot. When the burning feels really bad, I soak them in cold water. Feels soooo good. I don't like pain, but I think the numbness is really scary, I can get hurt and not know it till I see the blood or bruise. (And I was put on blood thinners last year for blood clots in my lungs … yikes) Sometimes my feet feel like I am wearing Kleenex boxes on them for shoes. Weird feeling but when they stretch the end of my big toe, feels like it's touching the end of the box. I hope this site will be of some help to me. I just turned 60 and have been having these problems such a short time.