anyone feel more burning/numbness when sitting

Good Afternoon @brayimee, I am so sorry that your chosen clinicians have appeared to be inattentive. The brain MRI is a necessity as well as the many skin, tissue, and blood tests. Before an Rx can be written there has to be verifying test information. My neurologist explained what might be called a process of elimination. Gabapentin was the first for me.....and I notice you are wondering if Gabapentin would help you and that it could be increased if necessary.

Yes, Gabapentin was my first Rx for dosages morning and evening. I could not handle the morning dose so just kept the nighttime dose and added in a anti-depressent....a godsend for sleep issues. However, it had very bad digestive side effects and was considered an older medication so I did a retreat that lasted 3 months. The medication substituted is duloxetine because my brain was way too fuzzy from anxiety and increased pain. Please notice that these changes were all made because the neurologist was on it....asking the right questions, and listening with attention.

My next change was the introduction of medical cannabis with the knowledge and support of the other clinicians on what I now call my team. I wanted to avoid opioids. That journey has had many turns and ups and downs. Remember that our bodies begin to tolerate medications more the longer we take them. So a 1/2 dropper of medical cannabis was no longer working and it was time to figure out what might work better......another dropper or a stronger dosage ratio. And then when you kind of fix that issue, along comes the neuropathic itch. I am currently going through numerous tests again to see how the itch might be controlled.

Unlike @rwinney, I did not have Connect contacts. I was on Connect but only for my life partner who has gone through some dicey prostate cancer issues. One day while waiting at Mayo for his next treatment, I found a card in the waiting area that mentioned Mayo Connect. I gingerly tapped the keys and was off and running.

So how did things change? I learned about topicals and found that cannabis topicals are much better than the compounded ones from specialty pharmacies. I found out I really didn't need four 300 mg gabapentin and dropped one to be replaced by a full dropper of an appropriate medical cannabis.

So, there is no perfect menu A, B, C, or D that will be helpful. Each person is unique. Your presenting issues are different than anyone elses, at least until today. The more you interact with Connect, the more trails you will find that might be great for you.

Please remember that medical issues are resolved better when the decision making is shared.....your clinicians with their own specialized experience and knowledge, your family and friends who have observed your behavior and you who have been living it essentially by yourself.

May you have peace and ease.
Chris

Jump to this post

Gabapetin was my first medication, very low, so I might ask to increase. I am not sure if it has really helped.

I am always hesitant to use any medication because I want a diagnosis, not medication to cover it up, but I know if pain is bad, I can't function so I have to use medication to help get me through some of it.

I am lucky that I have my family who have vouched for me in so many ways saying "You don't understand.. This girl went from never stopping, to staying in bed!" And it is true. Doctors do not know me, they don't know how active I was and to wake up one morning in pain that has now last 5 months and no answers. Apparently I picked a hard case 🙂

I pray every morning and every night that I get answers, or better yet wake up feeling better, but nothing has come about yet. After the next few tests and doctors visits, I am asking for referrals to Mayo or U of M. I need help.

It's not just the pain, but I have a hard time with gas/BMs, urinating, weak legs, heart rate. My whole body changed abruptly. And no one can figure it out.

thank you for your kind words, Chris x

Jump to this post

Gabapetin was my first medication, very low, so I might ask to increase. I am not sure if it has really helped.

I am always hesitant to use any medication because I want a diagnosis, not medication to cover it up, but I know if pain is bad, I can't function so I have to use medication to help get me through some of it.

I am lucky that I have my family who have vouched for me in so many ways saying "You don't understand.. This girl went from never stopping, to staying in bed!" And it is true. Doctors do not know me, they don't know how active I was and to wake up one morning in pain that has now last 5 months and no answers. Apparently I picked a hard case 🙂

I pray every morning and every night that I get answers, or better yet wake up feeling better, but nothing has come about yet. After the next few tests and doctors visits, I am asking for referrals to Mayo or U of M. I need help.

It's not just the pain, but I have a hard time with gas/BMs, urinating, weak legs, heart rate. My whole body changed abruptly. And no one can figure it out.

thank you for your kind words, Chris x

Jump to this post

@brayimee So sorry you feel so sick. Life is utterly fragile, and sudden illness proves it. You definitely need a diagnosis. I only have Neuropathy and have no clue how to put your symptoms together, but of course, they must be investigated. Best wishes and health to you. Lori Renee

Jump to this post

Hi @brayimee per our talk yesterday (on the other discussion) about the possibility that what you are dealing with is actually Guillain-Barre' syndrome, I would like to hear back from you after your doctor checks this out (please use my username @jesfactsmon so I will receive a notice) as I am very curious. Your symptoms really seem to coincide with GB. I also think it would be good for you to stay in touch with the Mayo Connect forum whether you use it regularly or just occasionally to discuss what you are going through, you'd be amazed at how helpful some feedback can be for you while you are going through all of this. Your problem has struck a chord with everyone here and I hope you can get to the bottom of it. All my best, Hank

Jump to this post

@jesfactsmon I will address at some point, it's hard because my doctor said he does not like me researching and bringing forth internet information. So I need to figure out how to speak with him about it..
I've been on here quite a bit looking up symptoms. I also posted in an anxiety forum. It's just been so stressful trying to figure this out.
Aimee x

Jump to this post

Gabapetin was my first medication, very low, so I might ask to increase. I am not sure if it has really helped.

I am always hesitant to use any medication because I want a diagnosis, not medication to cover it up, but I know if pain is bad, I can't function so I have to use medication to help get me through some of it.

I am lucky that I have my family who have vouched for me in so many ways saying "You don't understand.. This girl went from never stopping, to staying in bed!" And it is true. Doctors do not know me, they don't know how active I was and to wake up one morning in pain that has now last 5 months and no answers. Apparently I picked a hard case 🙂

I pray every morning and every night that I get answers, or better yet wake up feeling better, but nothing has come about yet. After the next few tests and doctors visits, I am asking for referrals to Mayo or U of M. I need help.

It's not just the pain, but I have a hard time with gas/BMs, urinating, weak legs, heart rate. My whole body changed abruptly. And no one can figure it out.

thank you for your kind words, Chris x

Jump to this post

@brayimee Sounds like things aren't going well for you and I'm sad to hear about your frustration. In my case I was diagnosed with small fiber peripheral neuropathy after my neurologist performed a biopsy. My uncle, sister and brother were all diagnosed with the same thing. The neurologist started me on 100mg of Gabapentin three times and day and after a few months got to 900mg three times a day. It didn't work for me, but it works great for my brother. He started at 100mg and his neurologist has increased it a few times. So your neurologist is the one to increase it. You might want to call and let his nurse know the pain gets to a level 7 (out of 10) or higher and ask what you should do about it. They might raise it over the phone or have you come in sooner. I found that if I tell them what's wrong and ask what I should do, they were more likely to increase my medications as apposed to me saying I think we should increase the medications. Also, don't give up hope. There are other prescriptions that they can prescribe for peripheral neuropathy. They doctor can also prescribe pain medication. My neurologist sent me to a pain management doctor. I no longer see a neurologist. They said there is nothing they can do for me.

Most of my doctors don't like hearing about what I find out on the internet, so I don't tell them directly that is where I heard about something. Last couple of times I just asked them if such-in-such would help and they prescribed it to me, but it didn't help. The only thing that has helped me is a peripheral nerve stimulator installed in both legs and pain medications.

Jump to this post