Living with Neuropathy - Welcome to the group

I do MFR and reiki it helps me with the depression. Luckily MFR was covered by insurance the Reiki is not so can get expensive. I want to start meditation but I’m so uptight trying to conquer this pain , I know that sounds funny but would have a hard time sitting still right now on my own . I am grateful for this group I had no idea so many people having these issue ‘s . Sometimes I just read the conversations and dont’t add In but at night when I’m in pain It helps to read them and it comforts me .

Hi John and group Returned from my 1st neurologist app. Really liked this young female doctor. Yes some of this awful swelling is Gapapentin, although not believing it was caused by it but can add to it. Working me off the Gapapentin and changing to Topamax ???. She believes there are underlying causes for the edema, mostly on my left side. She also will be delving into the possible cause of the nerve pain and neuropathy. First blood tests and then MRI's if needed of pelvis and back ad also checking on lymph damage or sickness. I have not had cancer or removal of lymph nodes, but could have issues. She feels there are underlying reasons for the nerve pain and edema. I have said this all along so at least our pages are similar. She ordered blood tests to look for autoimmune disease, Lyme disease, B12 and folate. These tests have been indicated to be performed when I read about neuropathy. So again a plus. I return to her in 4 weeks. No other instructions for now. Of course I am concerned about taking Topamax, but will certainly give it a try and hope some swelling will be eliminated. The pain is a do the best I can right now and she stated there is no fixing a damaged nerve, but if we can find a cause we have more options. Tomorrow I see my primary care. I am following through and admit I am concerned as to what might be the cause of my issues. Please continue to hang in with me.

Hello, I thought you would like to know that the generic for Lyrica is supposed to become available in July 2019. It will be welcome for many of us who are taking Lyrica now.

@dancermurphy Pain Management at Mayo suggested abdominal breathing, 10 minutes, 3 times a day. A good start until you can sit for meditation.

Anyone know what abdominal breathing is?

@margottaylor I think abdominal breathing is also called diaphragmatic breathing. Here's some information on how to do it:
https://my.clevelandclinic.org/health/articles/9445-diaphragmatic-breathinghragmatic

Thank you I’m very excited now.

@dancermurphy Good evening.....You have chosen some good practices for helping you to get control of the pain, especially with MFR. Depression is hard to battle without some help. Do you also have what you would call "anxiety"? You mention that you do not want to start meditation because you cannot sit still. Have you ever done walking meditation, perhaps through a park or public garden? This type of meditation was developed by Thich Nhat Hanh? He is a Vietnamese monk who brought meditation and mindfulness to so many people in France and in the US. When we do walking meditation, we stroll through a garden. When a flower or bird or plant comes into view, we can stop and focus all of our attention on that object. When our mind begins to wander, then we walk a bit until another element catches our eye and try again. Even if you just walk and count to 4 on the in breath and again to 4 on the out breath you will be meditating and able to have some freedom from the depressive thoughts.

Sometimes, if my hands, wrists, and arms are in pain, I lie on the floor and melt into the carpet. Then I just focus on the breath...or you can watch the fan go round and round. The whole purpose is to give your mind a break from the "heavy lifting" it is doing to deal with depression, pain and/or anxiety. I can always tell on a day when an appointment or other activity forces me to omit my meditation. I become a bit frenetic and my pain increases.

There are a number of meditation programs online. Although I have written my own guided meditation, I also use Calm. There are retreats and workshops that suggest you lie or stand as necessary. When you are comfortable with the technique, you may want to join a sangha or meditation group. We meet every Thursday evening for 90 minutes....starting and ending with a timed meditation. In between, we discuss reflections on a book we are reading together. Our sangha of 8 ladies has been meeting every Thursday for 4 years. To put it mildly, we have each other's backs. The bond is astounding. Wishing you much success as you achieve a pain-free day. Please let us know about your journey. We can all learn from each other. Chris

Thank you for the welcome and the links.i read up on the FB page. Good for you! I’m very happy it is helping you! Truly. I’m scared of that. I’m opioids, lots of gabapentin, and tizanidine. I’m afraid of the withdrawals. I’m going to get off the gabapentin because of the twitches in my brain and body that make me fall to the ground. I went through some withdrawals in July on my birthday to be exact it was horrible. I don’t have money or the patience for what that website is suggesting. It looks very expensive and tedious. I’m glad it works for you. Right now I’m not up for it. Maybe in the future though.

Thank you Chris ! I have sighed up for calm have not tried yet but hope to when I travel this weekend . I also do the wim hof method of breathing you can goggle it I find it helpful. I am walking by the beach which hearing the waves chills me out. I don’t have anxiety and hope I don’t . I am not depressed all the time only get saddened when I have a bad day or night . I am a workaholic and sometimes overwhelming exhaustion can surface I think from the Gabapentin. I think I might lead a meditation class so I can practice more . Thank you again