Ideas for pain relief from Small Fiber Neuropathy (SFN)

Good evening, @calliopy2, Welcome to Connect. I am sorry you find yourself ineligible for service at Loma Linda because of your location and level of financial support. Having lived near there for 20 years, I understand those frustrations.

Are you aware that clinicians and other providers at Mayo Clinic have a network that enables staff in another hospital to collaborate with teams at Mayo Clinic? Would that help your situation? What services do you need and/or what health situation are you facing right now?

Do you work with providers at a Pain Clinic?

I sort of chuckled at your age validation. I loved my mom and she was a beautiful woman. However, she aged like everyone else. Now I see more of her when I catch a reflection of myself today at 77.

When you mention that you have no support, what does that mean? What are your needs? Connect is a wonderful community with a mission of improving the quality of life of patients, caregivers, and families. We do need to know a bit more about the reason for your post.

Be safe and protected.
Chris

@rwinney No we all should vent at times here where we all understand how each feels with pain and whatever else we have to put up with so No vent when you need to we are all are best listeners unlike family ,mine in particular says oh there she goes again,I say wait and walk in my shoes for one day then let's see how you feel. Upward and onward Rachel Be kind to yourself. Linda

I live alone. Have a son in Nebraska. I am wheelchair dependent but do walk with 2 canes. Spinal stenosis makes the muscles week and the potential to fall scares me. I go everywhere in the chair. Peripheral neuropathy is a progression of spinal stenosis. Cant sleep because of the symptoms. I am good during the day and keep busy. Have been to 3 MD's for this problem but left their office without any help from them. I have tried CBD lotion, aspercreme, warm soaks with mag sulfate. The symptoms reduce for a few hours, but not long enough to sleep more than 3 hours. Would appreciate what others have done to reduce symptomology

Yes, it is @birdierobin. I try to remain focused on finding positive that has come with my conditions and have done so. However, the honest answer is one that I will never truly accept or be happy about. How can I, when it has greatly impacted my ability to be among the productive, functioning population. Eyes, chronic migraine, progressive SFPN...yup, here I go again feeling sorry for myself. Damn straight. Let me get this off my chest (sorry Robin that you are the recipient).

I had deep concern over traveling 1 hour 40 minutes in the car to my daughter's college for a (basketball) game. I don't travel well and it has progressively worsened. I understand that any joy or involvement comes with a price to pay.. I prepare for the offset of my journey...pain, discomfort, misery yet still trudge on.

I prepare not only mentally but physically for each part of my body, each situation that will occur. I travel with pain killers, mid-day supplements, nausea meds, migraine abortive packets, heat, ice, eye shields to black out light, ear plugs to defy noise, pillows for lower lumbar, pillow for under my butt to ease the pressure from all seats, baseball hat and sunglasses for light diffusion, loose foot wear and pants, layered clothing for temperature regulation.

Traveling is not conducive to any part of me but, I need to be among the living, yes? I can not sit in my bubble wrapped cocoon the rest of my life. I can not miss my daughter's college events. I can not send my husband off without me as even when I am with him, I'm barely present and a shell of what I used to be. None of this of course being fair to my husband of almost 30 years. Empty nesters and I have nothing to offer, nothing to give. It's an incredibly sad situation and reality for me, for us. Difficult when you bare the burden of knowing how severely you've changed someone else's life.

As I continue to work on mindfulness, I am aimlessly tested. I've come to recognize that my life, for the past 6 years, comes with strings attached. I have slowly declined since age 43 when first diagnosed with corneal disease and have needed to learn new ways of living to succeed and be present. Migraines and neuropathy have completely sealed the deal.

I'm a fighter and always will be but, if this ain't some exhausting shit...I don't know what is. I'm trying to come to terms with the rules of this game. I know basketball so, will break it down like this...

There is an offense and a defense. Wnning shouldn't be everything but, let's face it, it's a pretty huge part. There are time outs and quarters or halves. There is a coaching staff, players and fans. There are teammates and a game plan.

When life slam dunks you...you lean on your teammates, your coaches. You hope the athletic trainers will solve your physical set backs and get you back in the game. You get inspired by the fans in the stands supporting and cheering you on. You just want to win the game for them, for yourself...but, then you face the harsh reality of a loss. Parents of players (including myself) pick their kids up mentally and convey...winning isn't everything, there's always next game. 💪🏼

Here is a good place to end this self pity party...by thanking you all for being my
teammates and allowing me to lean on you. Never did I know such a team existed until I lost the game.

Be well today. I'm going to give it my best try.
Rachel

I live alone. Have a son in Nebraska. I am wheelchair dependent but do walk with 2 canes. Spinal stenosis makes the muscles week and the potential to fall scares me. I go everywhere in the chair. Peripheral neuropathy is a progression of spinal stenosis. Cant sleep because of the symptoms. I am good during the day and keep busy. Have been to 3 MD's for this problem but left their office without any help from them. I have tried CBD lotion, aspercreme, warm soaks with mag sulfate. The symptoms reduce for a few hours, but not long enough to sleep more than 3 hours. Would appreciate what others have done to reduce symptomology

Good evening Rachel, @rwinney. Without commenting on the contents of your post, I want to tell you about your gift. You know don't you that we all have the potential to arrive here on this planet with a gift, maybe a talent or a skill that is not quite like anyone else's. It may take us a long time to learn about our gift and even longer to learn what to do with it, how to share it with others unselfishly and most importantly how to use it to improve the quality of our own life.

I have a friend who's son came to her when he was in high school and asked, "Mom, how will I know what my gift is?" Well, today he is one of the brightest artists in not only our country but in the world. He has used his gift to help his parents, to motivate and inspire his contemporaries and to support the artistic endeavor he has chosen for his life's work.

Your gift is just beginning to emerge in your posts and your greetings. Your messages make us sit up and take notice. Your words plea for relief from frustration and anger over the degree of pain and discomfort you endure. They let us know when it is time to have gratitude and graciously thank the folks who help us.

And that's when you really shine.......when you give it what you call, your "best try."

May you be free of suffering and the causes of suffering.
Chris

Hi Rachel. I know how you feel about the changes in your life. Some people mark the time by important events in their life - like a marriage or the birth of a child. I mark time by an event that happened on April 27, 2012. My whole life changed when I became a paraplegic. I had been newly married, just 10 months, and suddenly I could no longer move at all. I could not sit up to feed myself, I was incontinent, and I could not even dress myself. I was hospitalized for six weeks. Because I was bedridden, I had multiple pulmonary emboli which were life threatening. I remember the doctor in the emergency room asking me for the telephone number of my next of kin. I told him to hang a bag or two of heparin and that I would be okay. It worked like a charm. But I still couldn’t take care of myself and I needed a lot of therapy to teach me how to live in a wheelchair. The burning, stabbing pain was there particularly in my spinal cord where the injury happened and also in my legs and hips. I had horrible leg spasms and my legs would go flying up in the air. I had no control of my body. I just wanted to get better. I truly believed that I would walk one day. That never happened, but with five years of intensive therapy, I can walk for a very short distance in a walker, probably only about 20 yards. I did discover how strong I was in spirit. I never gave up and even though I am wheelchair bound, I can take care of myself now. I miss being able to travel though. I am restricted by the pain and the difficulty of going more than two hours in the car. I really want to take a trip for the next birthday. I have looked into taking a cruise, but after seeing what happened to the passengers on the cruise ships with that virus from China, I think that I will forgo any trips on a ship. There are some train trips, but I don’t know how I will travel with my wheelchair and a suitcase. I need two hands to get around in the chair so how do I handle that suitcase? I will figure out something, I hope. My husband hates to travel so I will go alone when I figure out where I want to go. I need to carry a lot of supplies because of my incontinence. That is the worst part of being paralyzed. I hate the pain, but I have learned how to live with it. Because I am now in kidney failure, I have to pay a lot of attention to my bathroom issues. I am also on a strict kidney diet, so eating out is a big problem. Okay! I have unloaded today. We all need to do that sometimes and this forum seems to be the right place. I’m not depressed, just frustrated. I miss being able to walk in my house. I hate cooking from a wheelchair. I drop things all the time. Yesterday when I was taking a big jar of rice out of the pantry and I dropped it on the floor and there was rice all over the kitchen. Oh well, we all have myriad problems associated with our neuropathy. I feel better now.🤪

Good morning everyone-

I have good news to share! Today I'm feeling hopeful because I applied for the Jacksonville Mayo Clinic 3 week pain rehabilitation program.

There have been some worthy posts that peeked my interest but, I wasnt ready to commit. Yesterday, and lately, I've been feeling extremely hopeless. When that happens the moment has to hit me, and I will search very hard for hope.

I watched the video on Mayo's site explaining Central Sensitization and saw my exact blueprint from eyes to head to neuropathy to irregulation, pain and torment. It was indeed an emotional validation of my entire bodies dysfunction and debilitation. I strongly recommend watching if you are looking to think out of the box.

My concern over cost and ability hold me back alot in this life. It's just my nature. Truth is, as my husband reassures me, I am very fortunate to have an incredible support system from my family.

So, Y O L O....you only live once.
And for the record, this is NOT living!

I will remain optimistic that my insurance is accepted and I am accepted. We (my family and I) can cover added expense and I can will myself to physically make it happen.

I will not settle, can not settle and today I hope I have provided inspiration to anyone who is able or willing to think and feel the same.

Be well-
Rachel