How do you cope when your symptoms are at their worst?
 

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

Just cry.
Then you will be able to face it again.
If you don't let yourself feel the sadness, loss, fear... it will only be worse for your nervous system.
Fully feel the emotions and name them.... I am scared, I am so so sad, this is so hard, Im so ****** off, this isn't fair.... etc.
Feel it really deeply and then let it go.
Then- do the best you can to get back up in the saddle and try to be hopeful.
Don't think about next week. Just today and maybe tomorrow.
Be outside as much as you can. Eat healthy foods.
Love Love Love... because thats all it comes down to anyway. Count your blessings, but it's okay to be tragic in between.:hug:

Some days are worse than others and so is my response. Just think "I got through this other times, I'll get through it this time too". :hug:

So beautifully said... And clearly by someone who lives it. Thanks!

I've always been a strong and super fearless woman. And I've made it through some pretty difficult challenges in my life. But this disease will just tear you down and wear you out. It doesn't matter who you are.

Some of the things that I've done to help cope:

1. See a good pain therapist. My therapist was a pretty awesome and cutting edge lady and I learned lot about different pain management techniques from her. It's also nice to have someone for whom you can dump all your emotional stuff on. It keeps you from dumping too much emotional crap on your family, significant other, friends, or co-workers.

2. Meditation. I'm not really a mediation person, but I find that 5-15 minutes a day has been nice just to calm the mind before bed. I like the Calm app. Listening to music while laying on the floor works for me too.

3. Find the right balance between remaining still and moving during your day. Too much movement sometimes agitates my nerves and too much sitting can cause lots of burning. I have a desk job, so I try to break up the day and walk for 20 minutes at lunch.

4. Do what you need to do to get sleep at night; we need sleep to heal. I personally like the AC to be set to 73 or less to get decent night of sleep. I used to be a back sleeper, but now I tend to get buzzing and burning down my back on really bad nights. Sleeping on my side with a pillow between my legs has been my new go to position. I also take a healthy amount of nerve medication before bed, which is probably the most helpful thing.

5. Eat a whole foods diet as much as possible and take the highest quality supplements that are listed on this website (that you can afford). Give the body what it need to function and heal.

6. Get whatever exercise you are able to. We are all different and have to find what that means for our own medical stories. Going to pool classes is very akin to using a tens unit for me. It alleviates my pain (especially facial pain) and makes me feel better while I'm doing it.

7. Cry as hard as you need to! Just don't repeatedly cry in front of your loved ones. For the first 8 months of this disease, I used to cry at least 2 or 3 times each week. I'd wait until my husband went to bed, I'd go into the basement where no one could hear me, and then I'd just let it rip. 5 or 10 minutes is all you need. Then wipe your eyes and move on with your night.

8. Find things to be grateful about, even if it's something small. I felt grateful this summer every time my husband and I walked our dog before dinner or when we planted a few fruit trees in the backyard. Walking barefoot through my lawn while my husband watered the garden felt pretty darn awesome. These are the types of experiences that I never really keyed in on before I got SFN symptoms.

I'm sorry that you are going through this; you are in good company on this message board.

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.

Breakthrough Pain
 

Many here exercise to tolerance to maintain tone and lubricity. Symptoms change and vary regardless of any factor. If you search here for Breakthrough Pain, you can read stories about the flares and how other people have systems for when they feel like a rat trapped in the corner. Necessity id the mother of all invention. My process was (before pain management) a combination of Mag lotion, fetal position and self massage. I am sorry for your pain, I am happy for your productivity. Good Luck, Ken in Texas.

Thanks for the book recommendation. I ordered a copy from Amazon.com.

I'd like at add Viktor Frankl's book Man's Search for Meaning. It's about his time spent in a concentration camp during WW2 and how to find meaning even in the bleakest moments in life.

It's hard to follow all these amazing posts.

We got a puppy to help our family cope. She helps me not to feel so isolated when I am not fit to be around humans. We also inherited a talking, opinionated parrot who cheers and screams depending what's on the tv marathons.

I hope the worst is behind you. Stay hopeful.

Thanks so much all of you for your ideas and techniques. I can't believe how kind you all are here on this board. It's amazing to have found such a supportive network. I have had a lot of trouble over the last 6 months finding a place or people that understand the pain that we are all going through. My friends and family don't seem to understand how these nerve symptoms are with me 24 hours a day constantly eroding at me. They keep saying that "it will be right". The truth is that my body doesn't feel like it is going to be OK and the constant fight trying to put these symptoms out of my mind and live my life is draining.

I know I don't have a choice but to get on with my life as best I can. I just wish it was all alot easier than this.

Thanks for your suggestions I will definitely put them into practice.

Tim

I've got that book also. I have found a lot of emotional help and support from books.