Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
Good Morning from Texas. Beautiful morning. Please take what I say not as bragging or complaining. I've certainly done more than my share of that. I have dealt with neuropothy for almost 20+ years. It started in the bottom of my feet, hot and burning sensation and over the years it has creeped up to my knees and in my hands. I started taking gabapentin 200mg once a day,and have advanced to 800mg +50mg of Tramedol every six hrs. I have tried not taking the tramedol, and have found nothing OTC that works as well. I recently have tried to lessen the amount of gabapentin and again I paid dearly for it. The pain is almost unbearable. I have severe spinal stenosis and have a spine stimulator and it helps a great deal. I have a pace maker, heart surgery, have had 2 neck surgeries due to bone spurs. so pain has been a part of my everyday lving. And I am so grateful to be ALIVE!
It is so difficult to believe that our Medical institutions have not come up with better ways to treat this PN. I have talked to, emailed, read on this site about others who are suffering with this and the number seems to just keep growing. Is it our environment, eating,living habits that have created this? In this day of medical breaktroughs there has to be an answer.
Anyone, please share with me.
Peace that passes understanding to all……JJ
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@jjwest, I, too, am taking Gabapentin but it only helps a little. My dr. will no longer prescribe Tramadol for me. I TOTALLY agree you'd think doctors could come up with an answer to treating PN w/out using an opiod. Good luck to you. Take care. @cognac
Liked by John, Volunteer Mentor
Hi @clayhere — I'm sure it's frustrating for you that you can't get any answers. Did the Mayo neurologist provide any diagnosis?
I'm also tagging a member who has shared a lot of great information on different treatments to see if they can offer any suggestions.
Chris @artscaping do you have any suggestions for @clayhere ?
The Doctors are unable to come up with a diagnosis. I have constant pressure and pain in the center of my chest. It gets worse with activity. I have sharp stabbing pain that runs down both arms. Tingling and numbness in my arms and tingling in my legs and feet.Now my fingers are hurting real bad when I try to grip any thing. I have had a bad pain between my shoulder blades for several yrs along with miner chest pain then one day it hit me hard in my chest. I passed every test with no problems. Then 2 days later I was in the ER thinking I was having a heart attack. They did a heart cath and found a blockage 95%. Had two stents put in. Cardiologist was baffled as to why it didnt show up on stress test. That was on a Tuesday I went home on Wednesday chest pain was back on Thursday the following Monday I was back at his office with same symptoms. More test and xrays, CT scans blood work nothing. I have had two endoscopy's, esophagus test, not counting all the testing at Mayo clinic. My symptoms will not go away. You can count on your one hand how many days I have had a good day.
@clayhere do you have any upcoming doctor appointments? It sounds like you've been through the wringer with all the testing.
I'm wondering if most of the testing has been to rule out the life threatening causes for chest pain. I did a search on chest pain and found an interesting article on the subject when searching for pain in the center of the chest. I regularly use Google Scholar for searching as it will let you sort the results for the newest information and articles. It also is good for finding research information.
European Heart Journal: Acute Cardiovascular Care — Utility of simplicity for low-risk chest pain patients
This is the full list of links found in the search:
Hoping you have a pain free weekend.
Hi @suzylulu, I have found acupuncture to be the most effective treatment so far for my neuropathy symptoms. It hasn't eliminated them but it has made a difference in their severity/frequency, and doesn't blindside you with side effects like so many prescription meds. The down side is the potential expense and fitting these appointments in along with all the others… am currently in between sessions but look forward to getting back to it again soon. Good luck!
Thanks for answering.
@clayhere, @johnbishop, @jenniferhunter Good afternoon. I am going to try to give you some food for thought about similar issues that I have had, have resolved, or just plain have to deal with every day. I am including @jenniferhunter because her last post is relevant and helpful. When you spoke about the "straight jacket" around your rib cage, my memory kicked in. I also have a John Barnes trained Expert level Myofascial Release Therapist. You can go online and see how the fascia covers every organ in our body. Whether from tension and anxiety or by virtue of an accidental injury, the fascia can tighten and become very painful. My diagnosis was chronic myofascial pain syndrome. The very slow, gentle massage (MFR) attempts to push the pain out by getting rid of tightness. It can be a straight jacket in the chest area, bands of tingling pain around the head, burning feelings around the abdomen or what feels like the heart in the chest cavity. Sometimes one fascia layer will be released only to find a second layer underneath that may have been causing the discomfort. Many therapists may say they do MFR (myofascal realese) but really have not had the training. So…there is a directory for you at this link (https://www.myofascialrelease.com/find-a-therapist/). Sometimes I can feel the tightness in my ribcage or knee and work on an area myself. If you have a companion living with you, he or she may also be able to provide some immediate assistance. Recently, I have been concerned about increased numbness in my feet accompanied by a change of color in my feet and toes to a blue/purple. I had also become more unsteady on those feet and began to worry about losing my driver's license, resorting to a wheel chair, etc. So….yesterday, my MFR therapist worked on my feet. I could even feel the energy going up one leg and over to the other. To "net it out" for you, I came home and walked across the carpet…and felt the loops of fiber for the first time in a long while. And the purple feet are now flesh colored. I don't know how long lasting this treatment will be….I just know it worked and relieved my anxiety that was start to make my head and body tighten up. Hot showers, heating elements and meditation also work for me. A gentle series of yoga poses for strengthing the body works and must become a daily routine. Once a week just doesn't cut it. Making sure your body is in alignment every day is important. I recently discovered that the myofascial pain in my knee was sent there by my hip which was ensconced in a chair that did not have lumbar support. My therapist found the triggers in my lower spine and told me to change my chair or get a lumbar support pillow. That was three weeks ago and I have not had a reoccurrence. So…that's enough for today…you can go to my posts and read about my adoption of Medical Marijuana as my only pain control substance. Keep trying, keep asking and keep letting us know of your progress. Best wishes. This "group" is my truly best friend on this journey. Chris
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I have done a lot of research on chest pain and causes but I can not find one article that can explain most of my symptoms. I can find articles with some of my symptoms but thats it. No body can explain the sensitivity from my throat down. I cant hardly stand wearing a shirt it feels like it choking my. A seat belt is the worse. Went I get out of bed my chest starts tightening up. I have to lay down just about everyday to get the pressure and pain to ease up. I get bad sharp stabbing pains in my chest but it moves around. I think the pain between my shoulders is connected to the chest pain. I have a appointment with another neurologist oct. 8th.
@clayhere @johnbishop @artscaping
Yes you're absolutely right about MFR and the layers underneath the layers. It takes a long time to get that way, so unraveling that will take time too. I didn't know if it was OK to post the website link for the John Barnes website. My PT is an expert level trained there at Therapy on the Rocks in Sedona in addition to her doctorate in physical therapy. She told me that if you can't find a trained MFR practitioner in your area, call Therapy on the Rocks. They have to pay to be listed on the website, but if you call them, they can give you names of people who trained there. It was my physical therapist who said to me first, that she thought I had an issue with my cervical spine when my first symptom was a pain in my ankle when I turned my head that turned pain on and off with the position of my head. During the time I was treating TOS (thoracic outlet syndrome) with her, and my Cervical disc ruptured, and as time went on, I stopped progressing on my TOS therapy, and we focused on managing the muscle spasms as the spine issues got worse because of the spine problem. I did have spine surgery at Mayo, and had to recover and rehab from that during which my TOS pain got worse because of stopping therapy during healing of the incision and waiting for fusion, and because of the increasing tightness of the surgical scar tissue. I made a choice to stay in a neck brace for 4 months because I didn't want hardware on my spine and had to wait for the bones to fuse, and doing this weakens the neck muscles. I've been rehabbing, doing MFR on the TOS and scar tissue tightness, and rebuilding the muscle I lost before surgery because of spinal cord compression. I am now making progress on the TOS again. I have learned so much from my PT, that I can self treat and resolve a lot of things and we've been able to reduce therapy to once a week. I also build my core strength with swimming and horseback riding (slowly and safely with my doctor's permission) and that helps everything. Recovery is a slow process when there are a few things involved. I've had 3 years with MFR treatment and it does work wonders if you can be patient and help out with home stretching. She tells me that bones just go where they are told to go by the muscles and if those are twisted and stuck where they don't function properly, this is what MFR can help. With your comment about your feet, this is also what happens with TOS in the arms. My hands used to turn blue and purple and get cold when the circulation was compromised along with the nerve signals. I don't get this anymore. There are multiple compression points in the chest and variations on TOS, but it's basically not enough space in-between the collar bone and rib cage where everything needs to pass through. The fascia is like a spider web net that connects everything and I've felt it pull and release from my head down to my toes and even across the sides in my body. When it is off, it puts lots of extra pressure wherever it is too tight. Scar tissue forms in fascia too when it is cut or torn, and MFR can help that too. The fascia actually changes from a semi solid to a liquid state when it releases, and if reforms itself. Sometimes is takes some extra work to keep it after the remodeling. When you feel it release, it is like a slight tingle and this brings circulation to that area that was overly compressed. It's common to see areas of the skin blanch, and then turn red when circulation is restored. Once you get things moving correctly again, maintain it with stretching or something like Yoga which does also stretch the fascia. By doing this you also gain a 3 dimensional body awareness and can feel how things are connected and put together. I always feel great after my PT sessions. Chris, ask your therapist to explain what she does and make some suggestions for a home program to maintain what she has done. I have equipment recommended by my PT, foam roller, balls, things to mobile the spine, and reset the sacrum. You should ask for recommendations that would benefit your case from her. I have to reset my pelvis when it shifts because of fascial tightness. That can contribute a lot to back and sciatic pain. Releasing fascia also releases the toxins that have been stored there for years, and you can detox that with soaking in an epsom salt bath every few weeks or so for at least a half hour. My skin would get very itchy and irritated until I detox it through the skin, and I also absorb magnesium from the bath which helps the body in detoxing. I used to have a lot of fascial pain too. If you make this your habit, you will get past all of that and the fascia will be healthy again, and will have proper circulation of nutrients and oxygen as well as proper waste removal. You'll probably create some dark bathtub rings when you start this, and as more of the bad stuff has been released, it will happen a lot less when you soak in the epsom salts. Good luck on your journey and be well!
I think a neurology appointment is a step in the right direction. Has anyone looked at any possible spine issues? I had a lot of choking sensations from a ruptured disc and the associated muscle spasms with it in my neck for a few years before I found out about my spine issues. It caused me to loose my lordotic curve in my cervical spine. I had pain in the shoulder blades, and a lot of spine patients say that too. If you have a forward head position and the front of your chest is tight, it's going to pull on the shoulder blades in back which will cause pain. There could be a postural difference with your spine that could contribute. If there is any instability, it may be different when standing vs laying down, and full body spine X rays could show that. You'd need an MRI to show disc problems. I do have chest tightness from thoracic outlet syndrome. Stabbing pains in your arms can be from nerve entrapment anywhere along the nerve path from the spine to your hand. It could be the spinal cord, where the nerves exit the spine, thoracic outlet syndrome compression between the collar bone and chest, nerve compression in the elbow, carpal tunnel, etc. What you might want to do is find a dermatome map of he body online and print it out. Then diagram exactly where your pain is and what type of pain. Use different colors and symbols for stabbing, sharp, dull, tingling, numbness, etc. Do that every day and look for a pattern and if the pain changes location and write down what you are doing and what position your body and limbs are in when you feel this. Take that with you when you see the neurologist. You might want a physical therapy evaluation too if you can tolerate it. The physical therapist would focus on muscle tightness that could contribute. Does changing your posture and standing up straight with shoulders back change the pain? Have you ever had a whiplash injury? Does bending your neck change any pain? I've had all the symptoms you're describing and a lot of it was due to spinal cord compression from bone spurs with a ruptured disc causing pain all over my body. Tingling in your legs and feet can also be caused by spinal cord compression in the neck. I had that and pain all over my body from cervical stenosis and spine surgery fixed all of it. A lot of surgeons were confused by this and wouldn't help me, 5 in fact, so that is why I came to Mayo and my surgeon was familiar with this type of problem. I found medical literature that described unusual cases like mine and I sent that in when I asked for an appointment. It was frustrating and wasted 2 years while I was getting worse and loosing muscle mass to atrophy when no surgeon would help me because they didn't understand the problem and they expected different symptoms to match my spine imaging. I am rebuilding some of that now, but it is very slow to come back, and I'm regaining strength slowly. make a list of questions you want to ask the neurologist. If you do find literature that seems to match your symptoms, take that with you. It's great that you are researching literature. I figured out why my case was different and brought that hunch to Mayo and I was right. I think patients can have a lot of insight this way if you understand the medical literature well enough. I have a biology degree, so that helps , and I look up everything on my medical records to learn from it and what my doctors were thinking. Let the doctor make the diagnosis, but use your knowledge to direct questions toward what you think may be wrong.
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Yes, but have no answers .going to Johns Hopkins this month hoping they can help me
I have seen several Neurologist each one says something different seen three at Mayo. The one here said its my heart my Cardiologist says it ain't my heart. I do have several bulging disc C3,C4,C5,C6 and something going on at T10,T11. They tell me they dont think thats my problem. My family Dr keeps saying nephropathy. I have to agree it is something to do with my spine but all the test is not showing anything to warrant a diagnosis. I have seen Neurologist, Lung Dr, Cardiologist, Gastrologist , Pain Dr. They can not come up with a diagnosis. The Drs at Mayo couldnt find any answers they told me I was in the 10 to 12% of the unknown. It doesnt matter what position I am in the pain and pressure comes and goes. The pressure on my chest is constant and gets worse with any activity . The sharp stabbing pains hit at anytime no matter what I am doing. Laying down can cause it to get worse but getting still and resting it will ease up. I do know lifting makes my chest hurt as well in between my shoulder blades. I have asked about a pet scan on my heart and a Hyda scan on my bladder and was told I didn't need one.
@clayhere, Please forgive me, but may I just please yell at someone? Your post says the doctors can't find what is wrong. Yet when you ask for two tests you are told you don't need them. What's the matter? Aren't the doctors getting paid enough to give you the tests? If you're on Medicare, didn't their financial office "contract" enough payment for the tests? Or are they afraid the tests will show something they hadn't thought of and be embarrassed for their oversight? Again, please forgive me, clayhere. What your post describes is very similar to what I've been going through and I just finally had to get it out. Good luck, Friend. @cognac
May I let you know that yelling is good and we all have to do it at times to get every ones attention. Especially, when our health is what we are yelling about. We know our bodies better than anyone else. IF the first doctor does not help try a second, not necessarily in the same network, even if you have to pay for it out of your own pocket. Good luck.
You do have a lot of spine issues. Who said that the spine wasn't the problem and what was their specialty? I think you need a spine neurosurgeon opinion on that. I had only one bad disc that was collapsed down about 50% and it caused pain all over my body and you have a lot more discs involved. How old is the imaging? Have these symptoms become progressively worse over time? For me prior to spine surgery, when I laid on my back, my pain got worse in my legs. I also had stabbing pains in my arms that increased with activity, and I was at the point then, that there was no space left around my spinal cord. If I bent my neck, I had an electric bolt type pain down my entire body. Have you had any epidural injections to your spine? I did, and it took away all the pain in my body that was everywhere which was temporary. If you have had that same experience, that is the clue that spine surgery could fix that. Have you seen a neurologist in the spine center at Mayo? I could also suggest that you could send your spine imaging to my surgeon. He would look at that and evaluate if he thought this was spine related and it doesn't cost anything to do that. The neurologist I saw in the spine center and the neurosurgeon had slightly different opinions, and the surgeon didn't promise to fix my pain, but because I had worked with my physical therapist and knew the progression, I knew my symptoms were from the bone spurs advancing in the central canal, and I saw the bones spurs double in volume within 9 months on MRI. This is called funicular pain or tract pain when it is referred somewhere else that expected based on imaging. There is no test for it, but my surgeon knows this is possible, and he had me as a patient and saw another example of this when his surgery fixed all of the pain, and I think this confuses a lot of specialists. I think because it changes when you lay down, that might be because of some instability that could be putting pressure on your spinal cord if the vertebra is slipping. That happened to me because of 2 mm of backward slipping at the site of the ruptured disc. These are the kinds of clues that can help diagnose your case and you should write down everything because you'll forget something crucial when you're at appointments. You have enough spine conditions to warrant an evaluation with a spine surgeon. I was turned down by 5 spine surgeons who misunderstood my case, and they could not connect my leg pain to my cervical spine injury. I spent 2 years trying to find a surgeon to help me before coming to Mayo and just getting worse. It was because I read the papers from my future Mayo spine surgeon that mentioned leg pain with cervical stenosis and it had the term "funicular pain" and I looked that up, that I found the medical literature with the unusual spine cases like mine. I found this right after Surgeon #5 refused to help me, and I tried to get my other doctors to approach him with the literature on my behalf and none would. I knew he'd made a mistake, but no one would tell him. That is why I contacted this surgeon at Mayo, and came here, and his surgery was magic and it gave me my life back. The spinal cord is highly organized, like a conduit of electric wires with different purposes. Everything comes from the brain down to the body through the spinal cord and messages go back up through the cord to the brain. So squashing the cord anywhere, might damage the one wire that is going to the place you have pain or a massive muscle spasm. You can also have the nerves getting compressed where they exit the spine through the foramen at the nerve roots which is the space in-between each vertebral body. This pain would follow the dermatome map and be predictable because it is the specific nerve to supply a specific organ. The pain coming from squishing the spinal cord isn't very predictable since it's hard to pinpoint which wire it is. You can also have other compressions of nerves in the body adding more issues to the mess. My neurologist didn't think my MRI looked very bad, but the neurosurgeon thought I should have surgery and offered it to me. If you put a neck brace on to immobilize the neck, would your symptoms get any better? I'll post the link to the study I found. I think your symptoms can be explained by this kind of spine problem. I would encourage you to send your spine imaging for evaluation, and if you would like to do that with my Mayo neurosurgeon, I'll make the connection for you. You might need some current imaging of the entire spine to evaluate this. They did that for me at Mayo. The bone spurs can grow pretty fast around a ruptured disc, and you have multiple levels that could be causing this. It's hard to be the patient who is unusual when no one is thinking outside the box. Surgeons have to be careful and don't want to have a bad outcome, and if they are not confident, I wouldn't want them to operate on me. That's what makes this hard for both the doctors and patients. Here is the Case Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
@clayhere Listen to @cognac. There are many so-called doctors who refuse to order necessary tests. There are about 10 tests that would resolve my diagnostic problems complete, but the whole clinic of medics refuse to order them because they have never ordered them before. One MD refused to order a simple blood test because he "did not understand the disease completely." Crap. If that were legitimate, none of us would ever have married. https://bit.Ly/1w7j4j8
@clayhere, my friend, You name a bunch of the elements I am faced with. Right down the list, I would wager you have some form of Amyloidosis. Go to Mayo-MN, or Boston Gen, or MD Anderson-Houston. But forget your locals. They won't help, except to clean out your billfold.
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