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.

@2013pain Good morning. I believe you. I am here for you. I wish I could invite you to come and spend a week with me, mirroring my daily life and my daily confrontation with pain. I am not winning the battle with Small Fiber Neuropathy and Chronic Myofascial Pain Syndrome. With the help and support of dedicated clinicians, supportive family and friends, I have learned to carve out and support a quality life of joy and pleasure.

It seems that you have been aggressively pursuing options and medications. May I ask you to consider some mind/body approaches. First…..gentle or restorative yoga. I start my day paying attention to my body. Then, mindful meditation. These are daily practices. I also belong to a sangha of 8 women who always have my back. We have been together for 4 years meeting weekly. I joyfully pay for two retreats a year for three days of exclusive attention to what is going on in my mind and learning how to confront and deal with pain in my body.

And I may have saved the best till last. MFR, Myofascial Release treatments. I am using my iPad with limited search so will call on @jenniferhunter to introduce MFR and call attention to the discussion on Connect.

You are young and I am old at 77. I have been researching, exploring and experimenting for years. I think my leg pain has retreated enough this morning so I can have that hot shower and begin yoga, May you be free of suffering and the causes of suffering. I am here for you. Chris

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Dearest @2013pain sweetie feeling frustrated is normal as living with pain can drain you but trust me you don’t want to give up on yourself. I can only say I relate to you and I know how it feels when the pain doesn’t seem to go away and just the touch of your feet on the floor is pure agony! I often wondered about my doctors if they had any clue about what they’re doing? I can only share with you my journey and hope you’ll feel there’s someone you can turn to just to complain and let it all out as most of the time we just feel like screaming and we just need someone to listen without them trying to say it’s ok, it will get better! I’m a single mom and I’m thankful that I’ve managed to see my son through college the best that I can giving him all the love and support but I learned that I should’ve shared with him my restrictions instead of pressuring myself to be the perfect mother. For in these situations sharing with your loved ones helps all to deal with things and will make you less stressful. Stress is a major trigger of pain and as long as we have high or unrealistic expectations of ourselves our stress level will increase and this our pain will worsen. I haven’t been able to work for the last two years and just recently I accepted this fact and that helped in decreasing my stress. Don’t misunderstand me, I’m not giving up! I’m learning how to reinvent myself to make the best of my situation and in that hoping that I can create a lifestyle that will provide me with personal satisfaction and a fresh look at life. The first and most important step is acceptance and creating a new lifestyle that can fulfill you and trust me your family will support you for they’d rather have 1 hour of you being happy than many with you frustrated. I’ll be more than happy to be here for you and together to work on creating a new beginning of a wonderful new journey despite the pain. I hope this might be of help to you and please know I’m always here for you.sending you loads of love and healing hugs.

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@nadoush

Dearest @2013pain sweetie feeling frustrated is normal as living with pain can drain you but trust me you don’t want to give up on yourself. I can only say I relate to you and I know how it feels when the pain doesn’t seem to go away and just the touch of your feet on the floor is pure agony! I often wondered about my doctors if they had any clue about what they’re doing? I can only share with you my journey and hope you’ll feel there’s someone you can turn to just to complain and let it all out as most of the time we just feel like screaming and we just need someone to listen without them trying to say it’s ok, it will get better! I’m a single mom and I’m thankful that I’ve managed to see my son through college the best that I can giving him all the love and support but I learned that I should’ve shared with him my restrictions instead of pressuring myself to be the perfect mother. For in these situations sharing with your loved ones helps all to deal with things and will make you less stressful. Stress is a major trigger of pain and as long as we have high or unrealistic expectations of ourselves our stress level will increase and this our pain will worsen. I haven’t been able to work for the last two years and just recently I accepted this fact and that helped in decreasing my stress. Don’t misunderstand me, I’m not giving up! I’m learning how to reinvent myself to make the best of my situation and in that hoping that I can create a lifestyle that will provide me with personal satisfaction and a fresh look at life. The first and most important step is acceptance and creating a new lifestyle that can fulfill you and trust me your family will support you for they’d rather have 1 hour of you being happy than many with you frustrated. I’ll be more than happy to be here for you and together to work on creating a new beginning of a wonderful new journey despite the pain. I hope this might be of help to you and please know I’m always here for you.sending you loads of love and healing hugs.

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@nadoush, what a salient and supportive response. Thanks for mentioning the strategy of revealing and sharing your restrictions with loved ones. They do want to be supportive. It is difficult for them to see your pain and discomfort and not be able to “fix” you.

Sometimes just inviting them to watch a series on Netflix with you that you both enjoy becomes quality time. Other times it is sharing memories, a “Remember when” moment or two.

Maybe a bird feeder project and a journal of all the birds that visit. Learning together about migration and mating can be a project that you can enjoy together. Just some ideas. Chris

Liked by rwinney, nadoush

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@nadoush Hi! I think you just wrote this to me-but of course, you didn’t. I guess I’m hoping that if I reach out to you for help, you’ll help me, too! It’s been a rough 2 years for me and I thank God for Connect. I’ve had so many physical problems and it seems like when 1 thing goes right, I get knocked down with something else. I’m strong, I know, but even the strongest of us need to lean on someone every now and then. My whole world has turned upside down. I’m on disability and can’t support myself and as I find myself writing the next part, I also find myself deleting it. I have admitted that the person I live with and rely on – is an addict and thief. Oh God help me! Nadoush, I’m sorry I sort of hijacked your note to someone else. I’m sorry….Karen

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@karen00

@nadoush Hi! I think you just wrote this to me-but of course, you didn’t. I guess I’m hoping that if I reach out to you for help, you’ll help me, too! It’s been a rough 2 years for me and I thank God for Connect. I’ve had so many physical problems and it seems like when 1 thing goes right, I get knocked down with something else. I’m strong, I know, but even the strongest of us need to lean on someone every now and then. My whole world has turned upside down. I’m on disability and can’t support myself and as I find myself writing the next part, I also find myself deleting it. I have admitted that the person I live with and rely on – is an addict and thief. Oh God help me! Nadoush, I’m sorry I sort of hijacked your note to someone else. I’m sorry….Karen

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@karen00 sweetie I’m so happy that what I wrote touched you. We are all in this together and to support each other and it’s a privilege and an honor to be there for you and I’m sure we’ll help each other. Just a thought to share, you should be proud of yourself whenever you overcome a situation and things go well. Always celebrate that and use it as a motivation for when things go bad remember it can and will get better 😊what stood out is the person you rely on. Don’t put more on your plate, don’t take on his problems, you have enough to deal with. Maybe it’s time to change that? I cannot pretend that I have the solutions for you and only you knows what needs to be done. But I can promise you one thing overcome your fears and eliminate all negativity from your life as you’ll be surprised of how much this will help your physical condition. I’m here for you if you’d like to share more or feel like talking about it. Please remember you have the power to change your situation and fear creeps on us and thrives on our insecurities but once we face it we discover it’s powerless. Please try and put yourself first and if anyone cares for you they’ll want you to do that for they’d want to minimize your suffering. Sending you loads of love and healing hugs.

Liked by rwinney

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@2013pain, Good morning. I am revisiting your introduction post. I hope you have had some valuable responses.
In your post you speak of using 100% THC pills and they only last one hour. My experience tells me that you may need to try a tincture and the most THC active would be a 1:1 CBD/THC ratio.

Placing one dropper under your tongue where it can be absorbed quickly works best. Just make sure you have something in your tummy. The CBD, activated by the THC, works to calm the pain and any anxiety that might be enhancing the pain,

This dosage works very well for me especially to kickstart my day. It lasts about 4 hours, after which I then use a 2:1 CBD/THC for additional pain control as well as a calming of any depression that might be lingering. I am concerned that you may be missing an opportunity to just feel better. Please let me know how this dosage plan might work for you. May you have comfort and ease today. Chris

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@artscaping

@2013pain, Good morning. I am revisiting your introduction post. I hope you have had some valuable responses.
In your post you speak of using 100% THC pills and they only last one hour. My experience tells me that you may need to try a tincture and the most THC active would be a 1:1 CBD/THC ratio.

Placing one dropper under your tongue where it can be absorbed quickly works best. Just make sure you have something in your tummy. The CBD, activated by the THC, works to calm the pain and any anxiety that might be enhancing the pain,

This dosage works very well for me especially to kickstart my day. It lasts about 4 hours, after which I then use a 2:1 CBD/THC for additional pain control as well as a calming of any depression that might be lingering. I am concerned that you may be missing an opportunity to just feel better. Please let me know how this dosage plan might work for you. May you have comfort and ease today. Chris

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Hi Chris and @2013 pain, Papa and Barkley also carries a 1/30 tincture which is for alleviating all over body pain. I have no experience using this product so just informational. I have found so far that upping my magnesium has helped with the nighttime foot cramps. I also had a recent conversation with someone who has had success taking Lions Mane mushroom capsules which I intend to try for help with SFN pain and possible nerve regeneration. Helen

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I live pain, also, with severe peripheral neuropathy. One thing that does take pain away for about 4 hours is Kratom. It is addictive, so you cannot take it every day, but it ABSOLUTELY takes away pain. Like a miracle. Used wisely, it is a life saver. If anyone wants to know more, let me know. Lori Renee

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@helennicola, @2013pain, Good morning. Thanks for contributing to this conversation. I do not use the Papa and Barkley Tinctures. However, the 30:1 CBD/THC is, as noted, overwhelming weighted with CBD. I have used the Body Wash for all-over pain relief but did not re-order it. I have not used the 1:3 CBD/THC bath crystals. I still find a hot shower in the morning followed by yoga and meditation to be my best morning treatments to ease my body into the day.

The other worry I have for you @pain2013 was your statement about increased anxiety with the high THC product and limited pain relief of one hour for a dosage of 4 pills. 4 pills an hour is a lot of THC. And one of the signs is increased anxiety and panic attacks. I have been there and it takes about 3 hours to settle everything down. It has only happened twice in 4 years or so and I am much more careful now.

You may want to research something like the Papa and Barkley Right Ratio Pack which includes two tinctures and allows you to create the dosage that works best for you. One tincture is 30:1 CBD/THC and the other is 1:30 CBD/THC. With practice, you can create your own customized tincture. There is a dosage mixing guide that comes with the Right Ratio Pack with the dosage counted in drops.

As I mentioned to you Helen, I am going to try mixing my 3:1 CBD/THC Releaf Balm with the 1:3 CBD/THC Releaf Balm to see if I can find the most effective balance.

If you choose capsules then 1 capsule is recommended which lasts more than 3 hours. No one ever said that seeking and finding alternative medications was going to be easy. Under our own guidance, we are responsible for creating an Rx of medical cannabis unless you have a pain clinician who can recommend for you. We can't rely on a clinician or pharmacologist to help us unless they are available in the dispensaries.

The other issue is simply this. Tinctures, when held under the tongue for 15-30 seconds do not go through the digestive system and so come forward to help much sooner than a capsule. These are just my personal thoughts and learnings.

How are you feeling today? What are you thinking about today? What is your weightiest concern? Don't forget I am here for you. Be content and at ease. Chris

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@artscaping

@2013pain, Good morning. I am revisiting your introduction post. I hope you have had some valuable responses.
In your post you speak of using 100% THC pills and they only last one hour. My experience tells me that you may need to try a tincture and the most THC active would be a 1:1 CBD/THC ratio.

Placing one dropper under your tongue where it can be absorbed quickly works best. Just make sure you have something in your tummy. The CBD, activated by the THC, works to calm the pain and any anxiety that might be enhancing the pain,

This dosage works very well for me especially to kickstart my day. It lasts about 4 hours, after which I then use a 2:1 CBD/THC for additional pain control as well as a calming of any depression that might be lingering. I am concerned that you may be missing an opportunity to just feel better. Please let me know how this dosage plan might work for you. May you have comfort and ease today. Chris

Jump to this post

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!!!

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@2013pain

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!!!

Jump to this post

@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

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@2013pain

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!!!

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@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

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

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@2013pain

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!!!

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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

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@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

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