Psychological effects of living with neuropathy

I am 49 and was diagnosed with lumbosacral plexopathy in July (which is a rare form or neuropathy). It started with extreme weakness, numbness and pain in my upper legs to the point where I would collapse and could barely walk. As the months have gone on, the numbness and tingling have extended down my legs and into my feet, up into my torso and into my hands. Now my neurologist says these symptoms don't fit the original diagnosis and he has no idea what I have. Thankfully, back at the beginning of August, I contacted the Mayo Clinic about a second opinion appointment and was granted one in November which was the soonest they could get me in. I am hopeful they can figure out what is going on with me. Pain is mostly under control with gabapentin, but I always have a degree of pain that I have just learned to live with. Pain is much worse at night, and sometimes I can't sleep. I can walk but I use a walker when out in public (I don't go out very often because I am so scared of falling and I feel ashamed that I have such obvious physical limitations and have to use a walker). Stairs are incredibly difficult, which is nother reason I don't leave the house unless I have to. I have been receiving high dosage IV steroids every 2 weeks which help for about 5 days and then I go back to where I was.

Anyway, I agree that the psychological side is incredibly hard and many times, harder than the physical side. My son is a freshman in college and it was family weekend last weekend. I was able to visit him and see his dorm, but I realized over the weekend that there is so much I can't do because of my disability. So I spent a lot of time sitting in the car or the hotel while my family went shopping, hiking, exploring the campus.... and I was so depressed that I couldn't enjoy the things I used to take for granted. My depression also stems from what my condition is doing to my kids and husband. I feel terrible that they have to help me with so many things and I can tell my daughter is embarrassed of me. I can't really blame her.

I just recently found Connect and I am SO GLAD I did. I have been searching for a place to read about other's expereiences and share my own in hopes of feeling support and also learning some things along the way. Hang in there @danamw73 - I hope you can find some comfort from this group. And whine away! I completely understand!!

TY Ray, I’m so delighted to get feedback. I tried attending the live support group with my local bell 🔔 ringers group, I was the only one in attendance. Still ! I go each month to see if anyone is in attendance..
NOW ! I know there has to be someone that has tried
cannabis for relief. Don’t be shy speak up.good or bad idea/ experience.

Good morning. I tried cannabis, but not for pain associated with my PN. For several years, I and my partner attended a Feldenkrais workshop. The teacher suggested we try topical cannabis for arthritic pain. We did, but, in all honesty, we never thought it did much more for us than plain ol' OTC Aspercream with Lidocaine. Others in our workshop, however, reported better results. ––Ray

@ferfer5 Welcome to Connect. I'm glad you have an appointment for a consultation at Mayo and November will be here before you know it! How exciting! Make sure to request an accessible hotel room if you need that. Many have roll in showers. There are many discussions about accommodations in the Vising Mayo Clinic Group, and you can contact the free Mayo Concierge service (at Rochester location) for help in locating accommodations and services. There are special rates for Mayo Clinic patients and free shuttles between hotels and Mayo.

Five Ways to Contact Mayo Concierge Services

Phone: 507-538-8438

Live Chat: https://www.mayoclinic.org/patient-visitor-guide

Email: concierge@mayo.edu

Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

In-person in Rochester MN: Lobby hours are 8:00-5:00 Monday through Friday. Offices are located in the International Center in the Mayo Mathew’s Lobby, Executive Lounge on Mayo 5, Radiation Oncology Lobby – Desk R

I wanted to share a link with you about Lumbar Plexus Compression Syndrome. This may help you come up with some good questions to ask when you get to Mayo.

MSK Neurology - "How to identify and treat lumbar plexus compression syndrome (LPCS)"
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

It is hard being disabled and being left out. Perhaps family members are feeling a bit guilty about this and don't know how to talk about it with you. The first thing to realize is that this is not your fault. Your family has to adapt to the situation. No one should feel embarrassed because they need to help you because that is the kind thing to do. Would they hold a door open for a person with a cane, a walker, or a wheel chair? I think they would do that without a second thought. Helping in that way makes a person feel good. I know it's hard when you have always been the one caring for and helping everyone else, and to not be able to do that brings a sense of loss. Now that you need help, you can fall into a trap of thinking that you are not doing with you are supposed to do. Perception can be a tricky thing, and create misunderstandings. There is also the hope that something could get better after your trip to Mayo. What if there is an answer and your condition can be improved with good medical care? Having a positive outlook toward that will help you.

After being a caregiver for both my disabled elderly parents and doing difficult work, I broke my ankle and I needed help from my husband. I wasn't at home when it happened; I was on a horseback riding trip with friends, and one of them had to drive me home in my car after the initial emergency surgery at a hospital. It was very difficult living when I could not put weight on my leg and was dragging a walker around or unwieldy crutches and hopping on one leg. Everything takes planning and thinking about how to get through the day when you can't get around the house easily. Honestly, I can tell you that my husband saw this an an opportunity to show his love for me, and he feels valued in taking care of me. I feel the same way when I take care of doing things for him and helping him.

Here is what First Lady Rosalynn Carter said:

“There are only four kinds of people in the world––those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
- Rosalynn Carter

You may be interested in further information in the advocacy of the Roseynn Carter Institute for Caregivers which you may find at this link:
https://rosalynncarter.org/

Yep Ray, its all about moving forward. I've had to give up my identity as an athlete. Just as hard as you giving up the stage. Its taken me some time, but I have found creative outlets that take my mind off of my painful body, thank goodness. The word 'acceptance' is too passive. I believe a person has to actively seek new passions, a new way of living. Only then can we find satisfaction. For me, the key is looking forward, not backward. Thanks to everyone for their posts. Tis fascinating to hear how everyone else approaches these debilitating changes. min

I think you have expressed so well how I and millions like us feel with this disorder, in fact, I could not have said it any better than you have! It affects us physically, mentally and emotionally in so many different ways. Sometimes just getting through a day is so tiring and I welcome the comforting feel of my bed and bedroom. Is a sad commentary on our life isn’t it? We just have to put our best foot forward don’t we and there are days I’m not sure which foot that is! A bit of laughter helps now and then though.

Thank you all for the affirmations of the feelings I shared in my original posting. Be it good or bad, it always seems help to simply know that one is not alone, that there are others who have similar issues and who can, therefore, completely understand what you are describing and going through. The degree of disability may be different for each of this, but we are faced with accepting that this is "the new norm" for the remainder of our existence. I agree that it is good to seek out new passions and areas of interest. And if we had never suffered the pain of PN, we may never have found those new things that bring us joy and captivate our interest. And yes, a bit of laughter is always helpful. I sometimes find myself laughing at the simplest of things.... like trying to put my pants on one leg at a time without falling in the floor... 😂 And despite whatever limitations we have, we can still experience the world around us through taste, sight, smell, touch .... There is still a lot to be grateful for! I'm so glad I came across this group!

@domiha I have followed this discussion with great interest, not because I have Neuropathy, but because I have other conditions that will never go away, have caused changes in my routine (daily time required for maintenance of airways, ability to keep moving, etc), are progressive, and limit what I am able to do. Like others here, I am constantly having to "reinvent" myself. My energizer bunny days are over, my gardens rely on help - both hired and volunteer - to flourish, tremors have completely changed my approach to fiber art and what I do& how, and I look always for ways to entertain, have adventures and otherwise live my life in the body I have today.
There are days when I look at the med box, nebulizer, exercises and ask "What if I just quit it all?" Then I indulge in a few minutes (or more on a bad day) of self pity and remember that I am still "on the right side of the dirt" and think about the things I can do.
Every once in a while I get thrown a curve ball - recent med changes are beating me up right now - and it gets hard to be positive for a while. Then I go back to an essay I wrote some time ago about my Mom, who lived her life in "chapters" right up to the time of her death. Some of them were darned difficult, and she would get really blue for a while, but she always pressed on. As soon as I can find it, I think I'll print it here.

This thread is a blessing to all who live in ever-changing bodies.
Sue

"I believe a person has to actively seek new passions … "

Amen to that! In the weeks following my quitting acting, I wallowed aimlessly. Even though I had actor-pals suggesting I try voice work, I was too preoccupied feeling glum. Then, when I finally thought I might give it a try, nothing happened. I sat around waiting for voice work to come to me. It wasn't until I did a little online snooping, found the name and number of an established voice/actor in Chicago, called him, told him of my predicament, and started following the advice he was providing so generously, that my life started to pick up, as did my spirits. But, as you say, I couldn't remain passive; I had to become actively involved in mending my life.

Ray (@ray666)

Med changes.....argggggg....I can sure identify with that. Between the Neurologist, Pain Mgt Doc and GP it seems to be one big Lazy Susan of offerings. I've finally reached some stability and have found drugs that provide relief but don't turn me into a zombie. We really do have to be our own advocates.