Quote:
Originally Posted by tholden85
Hi all,
I outlined my story in a previous post but I have been suffering body wide peripheral neuropathy symptoms after an acute attack of pn for 6 months now with no real improvement (worse if anything). I have my good days and bad days both physically and mentally but I am fully aware that stress and despair definitely make my symptoms worse. It is for this reason (and also to not worry my beautiful fiance) that I try to keep a positive outlook that my situation may improve. However last night I gave in to the fear and anxiety yet again and broke down in tears. We had, had a busy week moving apartments and I was physically straining myself a lot more than I normally would. Despite this my symptoms were as good as they had ever been during this whole nightmare. After a week of exerting myself and still feeling pretty good I started to get a little bit of hope creeping in that I was getting better. However last night after a long day I was doing the dishes and had this intense wave of pain flood my feet and legs. My body broke out into bodywide tingling again. I just felt so dejected that I fell apart and cried for hours. I was beside myself and my fiance was distressed as well because she couldn't calm me down. During the night as my mood got worse my symptom followed and it was a very long evening.
I know from past experience that if I hold it together and distract myself with another task that these flair ups are denied an emotional response and are not quite as bad. However it's when these symptoms are at their worst that I really struggle to fight back the negative emotion. What do you guys do out there to cope when you are at your worst? Also is it typical to have your symptoms wax and wane for almost no apparent reason? I have been on my feet all week with little symptoms, and today they both feel like they have been stabbed to death and have muscle twitching all over my body.
Thanks in advance
Tim
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Boy do I hear you! My technique is multifaceted.
First I taught myself the Body Scan Meditation that really can get me deeply relaxed and I practice that at least twice a day or something similar. For 30 to 45 min each time. I also use a light and sound machine to the same ends. Anywhere from 10 to 40 min sessions.
I do this every day and so when the flare comes I have the skills to deeply relax in seconds. This has stopped a minor flare for me several times and it certainly makes my days much easier.
Then I use a vegan diet with lots of sprouts and raw veggies etc. Designed to keep my blood sugar as low as possible to prevent or lessen flaring. I actually make a sugar free ice cream that is loaded with fermented protein and very little carbs that tastes better than anything I've ever eaten.
Then I write a page of affirmations each night before bed.
Then I have some compounded creams that help to a small degree.
I'm telling you now that I do this every day and my flaring has certainly lessened to a noticeable degree. This all happens over time depending on how intent and motivated you are but doesn't take that long to start seeing results.
Then as I said to you in another thread, I give myself permission to consider anything and everything as a response to this horrible disease. Nothing is off the table or taboo. This brings some peace for me. I have found that anything that reduces stress and anxiety will have a powerful effect on pain.
I'd like to recommend to you a Book called "Full Catastrophe Living - Using the Wisdom of your body to face Stress, Pain and Illness" by Jon Kabat-zinn Ph.D. This book is from a program at the Stress Reduction Clinic at the University of Massachusetts Medical Center. It was highly successful at reducing pain on patients that the pain docs had given up on. 70% had a reduction in pain, sometimes significant and a few actually reversed the disease process. I'm sure there were some neuropathy folk there. They also sell the pre-made mindfullness meditation/body scan and some others that may be helpful. It's really been a life saver for me. This is a large book and has lots of really powerful information on dealing with pain and stress. It's like having a very smart friend in your corner. Amazon should have it.
I do hope that something here can help you brother. I've been thinking of you often since your first post.