Connect
← Return to Psychological effects of living with neuropathy
Discussion
Psychological effects of living with neuropathy
Neuropathy | Last Active: Dec 1, 2023 | Replies (106)Comment receiving replies
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!!
Replies to "I am 49 and was diagnosed with lumbosacral plexopathy in July (which is a rare form..."
Connect
@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/