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Not diabetic with Chronic Pain with Idiopathic SFN, tried everything
Neuropathy | Last Active: Dec 17, 2019 | Replies (16)Comment receiving replies
Thank you everyone for the kind words, it means d sad o much to me that I’m not in this a lone. I just told my MD that I’m stopping the morphine because I felt it didn’t do anything for me at all maybe lasted 40 minutes and it was a long lasting medication. They r going back to the hydro. 4 times a day which had some benefits but it’s just so hard for me to accept this condition at my age with 2 daughters that want to do so much with me. I cry at night because I can’t stand more than 10 minutes just to bake cookies, now I noticed I’m having a hard time driving. The only time I don’t really
Have pain is if I’m in bed. What kind of a life is this? I was dreaming of having this wonderful home we live in now that I can’t keep up with to clean, take my girls to the park to play, etc. go Xmas shopping with them. I mean they r now seeking counseling because of me, one tried to comment suicide. I’m having a really hard time this week.
I’m trying to up my magnesium, I’ll try the CBD/THC, acupuncture starts on Monday, see if that helps again? Which I told my pain management it only helped with my anxiety but it’s worth a shot, juicing carrot and celery because read that’s supposed to help, but I guess I have expectations that it will go away and I can’t accept it that I will have this forever.
I do meditation daily, restorative yoga, my sister is a yoga instructor so she helps out a lot, but it’s like a never ending battle and I’m still trying to find a job, and during the interview my pain takes my thoughts and I can’t concentrate, just over sucks!!!
I hate when people say I’m sorry I wish I could do
Something, yes u can chop my legs off!!!
Replies to "Thank you everyone for the kind words, it means d sad o much to me that..."
@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
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
@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
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@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