anyone feel more burning/numbness when sitting
Hi I am getting beyond frustrated! Laying down puts my pain at 110% ,sitting in a chair puts the numbness and burning way over my threshold of pain. I can hardly sit at a table to write,eat,carry on a conversation,within minutes I question if my feet and calves actually look as painful as they feel! They look fine yet oh the nerves just go nuts firing in all directions with a bed of hot coals. I have been on every medication to to man,even some unknown! Thanks for your knowledge Marianne
Interested in more discussions like this? Go to the Neuropathy Support Group.
I'd love to know this answer. My cardiologist suggested neuropathy for my pain. I take gabapentin at night, but thinking of upping to see if it works while I'm up.
@brayimee There are a handful of supplements that are known to help neuropathy. Your neurologist should recommend certain ones for your diagnosis. My neurologist recommended Acetyl L Carnitine, R Alpha Lioic Acid and B12 (as I was deficient). B vitamins are very important for neuropathy however too much vitamin B6 can cause neuropathy. It's always best to have your Dr review all you are taking. That being said, there is a facebook neuropathy site which has developed a supplement protocol. @johnbishop suggested the "Protocol" based on his own use. I began taking it last September. It may take a couple months to kick in but, in my opinion, it is well worth the wait. I recently went off the Protocol for a week to prove whether it was impactful for me and YES, it was. I noticed a difference in many odd sensations returning along with knife stabbing pains. John is the man, and will send you the link to check out for yourself. (Thanks John!) Again, run it by your Dr to be safe regarding any interference with preexisting conditions.
My neurologist wasn't very empathetic. He sent me for a brain MRI and said see you in 3 months. I'm relying on wonderful people like you to see if I can help myself. When I explained to him I feel like my intestines shut off, I can't drain my bladder fully, all my pain is left side and I have weak legs. He said I'm stumped and pushed me out the door. I will look at the facebook page 🙂
I was in a similar boat after being diagnosed with SFN. My Dr. labeled me with polyneuropathy after biopsy and sent me on my way. I'd go back again and again telling him my legs were dying, my pain was increasing throughout my body and I would be the one to ask him about supplements, Lyrica, etc… I found Mayo Connect in May 2019 as I was desperate to learn more than Google was offering. Needed to connect and learn from personal experiences. Being involved here has taught me so much from recommended books/videos, myofascial release therapy, supplement Protocol, medical marijuana and a plethora of other holistic approaches. Not to mention the support and care I've received that blew any shrink out of the water and saved money! But, that's my personal opinion and experience.
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.
Sometimes I think it is best to ask about personal experiences. What works for some might not work for others or what works for someone might also work for you. I have my own care plan lined up and if it's a fail, I will be contacting Mayo. I personally feel doctors are leaving bits and pieces out or are not looking at all my tests these last 5 months. I have some theories about my issues, but my doctors don't want to hear them. They dismiss it when I bring it up, so how can I get help from them if they do not listen? What is happening to me is NOT normal and if they look back, they will see that I was never in the office asking for help until now. So frustrating.
I love myofascial release and I too use marijuana at times. It helps!
@brayimee Atta girl! Go with your gut and keep pushing. You know your body best.
Hi @brayimee I'd like to add my 2 cents to reaffirm what has already been said by Rachel @rwinney and Chris @artscaping I have read at least a couple thousand posts on Mayo Connect since I found it in January of this year. Two conclusions that you are leaning toward are that 1) your doctors have been less than extremely helpful and 2) that you want the input of other people who are going through similar issues as yourself. With just the experience I have had on Connect so far I think your belief that many (not all) doctors are not that helpful is shared by a lot of other people. And I can tell you for a fact that most of the contributors to this forum have had a LOT of experience with their respective illnesses, and they have learned a lot about what works for them, doesn't work for them as well as many of the pitfalls of various ideas people have tried for their illnesses, whatever they may be, in this case neuropathy. Rachel, Chris, John, and a host of others will offer you great insights here if you just hang out. I am certain that you can profit greatly by reading the posts, discussing your issues and contributing your own knowledge and experience in order to help others as well. Best of luck! Hank
My primary and Cardio have been my best doctors. However, things move slowly and I must be patient. It's tough when I went from lifting weights, running and just being overall active to resting 90% of my day. They seem to not think that us urgent ( weak legs, urinary&bowel issues). I have my theories, but I hate stepping on doctors toes. I might have to start another thread aside from my original post "internal vibrations & nerve firing", but I did a search and didn't see anything for hemangiomas.
I absolutely love connecting with all people who have similar symptoms or advice. It makes us feel less alone.
Since my previous post I discovered that (unknown to me) you had had another whole conversation yesterday under a related discussion and I see my previous comments were unneeded. I also am now able to grasp the gravity of your situation. Just very weird. It sounds like you were totally normal and fine one day and woke up the next with this whole raft of strange unpleasant symptoms. Was it almost that sudden seeming? Your doctors seem to be unable to put this all together into any sort of comprehensive explanation and I guess they are perplexed as you are. Your symptoms affect your heart, your BP, your bowels and urination, your left side nerves, your legs, your spine, you have intense sweating (in conjunction with the nerve/vibration sensations?). Your discussion of the T14 and T1-4 vertabrae seems like a good place to be thinking about. With so much going on all at once involving so many different systems it seems like looking at places that have an affect on all of these things is where to be looking, someplace where they have an overlap. I think you are on a good track with your thinking and research. I am sure you have thought back to before this happened and examined every possible thing that happened in your life that might provide a lead as to where this all came from, correct? Did you come up with any ideas or possible incidents in your life or occurrences that seemed suspicious in relation to causing all of this weirdness? Like others have expressed, my heart is with you Aimee. I hope a breakthrough comes soon, either in assessing the cause itself or in finding a cure, either for some of these symptoms or, preferably ALL of them! Hank