Anyone here dealing with peripheral neuropathy?
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Hi @johnbishop – Do you know of anyone in the group who is dealing with blood pressure swings as part of their neuropathy? I go from low BP in the mornings and after eating to high BP if I sit for too long, then back to low BP upon standing… tried various meds but they swing the levels too far in both directions. Had to resort to having Cheezits for breakfast this morning (ugh) just so I could stand long enough to get ready for work… Do you know what's worked for other people?
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Hello @elizabej — I did a quick search of Connect but was not able to find a member post that mentioned blood pressure swings with their neuropathy.
Have you discussed the blood pressure swings with your doctor?
I have no medical training or background but I think that it could be a symptom of autonomic nerve damage according to NIH
Hopefully one of our members with similar symptoms can offer some suggestions.
@elizabej and @johnbishop Just a little input. My bp ranges from 80/40 to 180/100. And I agree. Autonomic nerve damage. Same with GL swings.
Hello John I have yet to hear anybody with the same symptoms I have with PN. I have heart attack like symptoms and no body can explain it or find the cause. It has taken a toll on me mentally and physically. I have tried a dozen different meds but nothing has helped except the side effects has caused a cataract in my eye. I have even tried a spine stimulator with no relief. Just the smallest activity causes the symptoms to flare up. This has been going on for two yrs now.. My cardiologist says I am unique because standard testing does not work on me, even my family Dr is at a loss I have seen neurologist at Mayo and here as well. Every Dr is puzzled.
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 ?
I've had symptoms that made me think I had a heart problem, but I don't. What I do have is tightness in my chest with thoracic outlet syndrome that causes my neck to be tight, and the position of my head and neck, can trigger a muscle spasm into the front of my chest near the sternum. I've done that with a forward and turned head position causing an instant spasm, and I've been able to massage out the spasm and stop the pain. TOS has caused my ribs to twist out of shape which is painful where ribs connect with the sternum. It's like a straight jacket that twists my chest out of shape and it even caused a functional scoliosis, but that is normal again after long term physical therapy. I also had a ruptured cervical disc that was contributing to kicking up the muscle spasms, and I am close to 2 years post-op from surgery at Mayo for my spine which helped a lot of the issues. Stress can also trigger this when muscle tighten, and with TOS, posture is very important. What I think happens is that the nerves that control the heart and lungs are passing through overly tight muscles in the neck and chest and triggering this. The TOS is worse on one side, and has prevented me from breathing properly when one side doesn't expand enough, and then it can trap phlegm, and I've had repeating chest infections on that side, but without normal symptoms, so it made it hard for me to distinguish this from asthma and allergies that I also have, so if I don't get enough air, my heart rate goes up, and can be over 100 at rest. A course of antibiotics resolved this and returned my heart rate to normal again. I've worked on proper mechanics with breathing in physical therapy. I take allergy shots regularly to control this, and I am better at recognizing when I'm getting an infection and treat it right away and I had to clear phlegm when I feel it. I'm not sure what activity is triggering your symptoms. For me, if I have the chest infection, I will notice my heart rate go up when climbing stairs or a slight exertion. Twenty years ago, I had a whiplash that probably caused the spine issues and may be the reason that the TOS is worse on one side because my head was turned to the left during the impact. The physical therapist who has helped me the most is a traditional therapist who also does myofascial release work to loosen the tight fascia that binds the body together. For example, I had a "scolosis" that I could not untwist until the tissue allowed that movement and I remember the day that every thoracic vertebrae reset itself into a normal position when I rolled on a device in therapy right after my PT had released tissue. That gave me instant relief from the fatigue that was always there when it was out of alignment. This was prior to my neck surgery, and I wouldn't be doing this after spine surgery while wearing a neck brace or without my surgeon's blessing. I've also had improvement in a bulging thoracic disc seen on my MRIs after therapy realigned my body, and I no longer feel the stiffness at that level in my spine and it moves better. You can look for information on the John Barnes methods of myofascial release as the website has a lot of information. It is a hands on therapy like kneading bread dough in slow motion, so the therapist holds the stretch with her hands until the fascia releases. I've done this for a few years and it has helped a lot. I did have a setback because of recovering from spine surgery, but I am making good progress again. TOS can easily be missed by doctors because it is hardly mentioned in medical schools. Mayo can diagnose and treat it and that's why I came here because I had that along with the spine problems and some unusual symptoms that several spine surgeons missed, and I was having trouble finding a surgeon who would help me. I came to Mayo, and it changed my life.
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
@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
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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