Not diabetic with Chronic Pain with Idiopathic SFN, tried everything

Posted by 2013pain @2013pain, Dec 6, 2019

I am running out of ideas, I have researched this disease inside and out. I have tried everything under the sun, From holistic acupuncture, chiropractic, to foods, to medication, PT, you name it I have probably have tried it.
I am now seeing a Pain Psychologist, Pain Management, a regular psychologist for my depression and anxiety. I noticed as soon as I get on my feet my legs start to hurt, meaning my calves are burning, throbbing, aching, and my feet feel like they are swollen but they're not. They feel like heavy metal that I can't lift my feet. Sometimes in the car, I feel like I can't drive anymore and I am only 43 years old. This started when I was 35 I think, but wasn't fully diagnosed or I should say didn't believe me until 5 years ago after my small nerves are completely dead now.
I have even tried Medical Cannabis it gave me major panic attacks at first, but now I think my body is getting used to it, but it has to be only the THC and it only lasts for like an hour and that's taking 4 pills. I am also on 1 morphine pill which is long-acting, more like not. Takes a little bit of the pain away for like 40 minutes if I am standing, then 2 hydrocodone later in the evening and afternoon. takes the pain away a little bit but not enough to enjoy life with my family, can't walk up and down the stairs, can't clean the house, or stand very long. the girls want me to take them shopping, but I can't. they don't understand and I get more upset at myself.
I researched medications that will work, I can't seem to find anything, or my Pain management MD we don't have the right combination or something isn't right. I don't understand how these people in the SFN foundation can go hiking, go on vacations with their families, etc. I can lye in bed and that's about it.
My provider says to pace myself, but it's kind of hard when you have two kids and a family to run and now I am trying to find a job. Hopefully, more PT, because I don't think I can do an FT job now and come home and clean, cook, and spend time with the kids.
Please help with what meds have worked and not. I have tried Lyrica, Gabapentin, the antidepressants, some made my RLS worse at night. Nothing is taking this 24/7 pain away and I just want to cut my legs off seriously.

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Jim, Volunteer Mentor | @jimhd | Dec 12, 2019

In reply to @2013pain "Thank you everyone for the kind words, it means d sad o much to me that..." + (show)

@2013pain

I know that it's really hard to have dreams and expectations that we'll not be able to achieve, barring a miracle medical breakthrough. Night is sometimes the worst part of the day for me. I don't understand why the pain is so much worse for me when I lie down. This disease is so unpredictable. I'm glad that your daughter is getting help. We can only experiment with and chase after pain control to the best of our capability.

Jim

Chris Trout, Volunteer Mentor | @artscaping | Dec 12, 2019

In reply to @2013pain "Thank you everyone for the kind words, it means d sad o much to me that..." + (show)

@2013pain, It doesn't seem to get any easier. How old are your daughters? Can they be helpful? Maybe that is what they want to do for you. I know none of us want folks to feel sorry for us. However, it may be that you are misinterpreting their expression of "I'm sorry, I wish I could do something." Actually, in most cases, our family and friends do feel very badly that they cannot "fix" us. They feel helpless. Sometimes just acknowledging their concern makes all the difference.

I am a caregiver for a neighbor who fell in a large hospital doorway. Massive brain trauma and lots of incapacitating injuries. It has been almost a year because of long surgery stays at Mayo and five months in a rehab facility. She was sad that her Facebook friends were no longer inquiring about her. I posted her photo and message on my page and she received 44 comments overnight. Now she can respond to each one as she feels capable. Her friends were there, they just didn't understand why she couldn't respond. May you have a lovely night's rest. Chris

wilcy | @wilcy | Dec 12, 2019

Have same as you! Tried everything, even back surgery! Am older than you! No social life!

Rachel, Volunteer Mentor | @rwinney | Dec 12, 2019

In reply to @2013pain "Thank you everyone for the kind words, it means d sad o much to me that..." + (show)

Hello. I feel your pain and concerns. I was always so grateful my son went off to college when my disabilities began. My daughter however was younger and lived through much of my demise. It ripped my heart out to see her cry over me and know she had to speak with friends and her school counselor because of the new life she was living with me. I'm a proud, independent person who has standards and a vision of how I think things should be. It took alot of acceptance and patience on my behalf to allow people, including my daughter, to help me. You sound alot like me in this regard. I was and still am forced to learn new life lessons on who I am, what I'm made of and how I can still succeed given my disability. It is a daily challenge for us and our families more than we realize. My daughter has stirred brownie mix when I couldn't, made and brought my food to me in bed, got medicine for me or ice or heat, on and on. As she got older and was driving, she had to drive me places and know to keep her loud music low or off because of my head (neuropathy/migraines). It made me feel like such an invalid. I pushed through so much to remain an active, present parent in her life and she saw me hurting all the while. I know that you are doing the same with your girls. It may not be what we had in mind but it's what we got. It's disappointing and maddening to say the least. My daughter just went off to college and is taking disability classes. She's become a stronger person and so have I, we have no choice if we want to succeed at what life throws our way. May you continue to find support, comfort and understanding during your struggles and challenges and most of all may you begin to find peace, acceptance and love along the way. Your story truly breaks my heart because I relate so deeply. I'm here if you ever need to talk or vent or ask questions. You are a powerful woman and you will get through this with your family right by your side. Best wishes for a peaceful day.
Rachel

lorirenee1 | @lorirenee1 | Dec 12, 2019

@2013 pain I also have severe, painful foot neuropathy that has utterly changed my life. I want you to try Kratom. It is a powdered leaf that you put in water, and gulp down. It WILL take pain away for about 4 hours. Buy it at Happyhippoherbals.com Buy a slow strain, Maeng Da. Do not use it daily, as it can be addictive, but try for every other day. It will help immensely. Let me know if you want more info, and research Kratom. It is a blessing. Lori Renee

karen00 | @karen00 | Dec 17, 2019

In reply to @2013pain "Thank you everyone for the kind words, it means d sad o much to me that..." + (show)

@2013pain hey! I’m wondering how you are doing. I, too, deal with chronic pain. I am so thankful for this group and don’t know how I’d be without it! Just to understand that you are not alone, makes a world of difference! Also knowing that if you do have a setback and fall that there are those who will help you up. Please write back and let me know how you are doing! ...................Karen