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Neuropathy and fibromyalgia unbearable pain
I am 68 years old and was told I had fibromyalgia in its early years when nobody believed it to be real so I suffered many years trying to get help. Now for the last year I have struggled with leg and feet pain and I was told it was the fibromyalgia and exercise would help. My legs became so weak i started falling and the muscle mass started disappearing. They say it is neuropathy. I am on gabapentin, duloxetine, tizanidine and hydrocodone and started my 2nd round of physical therapy. Honestly nothing is working very good and I keep falling 😌
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Have you ever tried low dose naltrexone for pain? You can read about it at http://www.ldnresearchtrust.org. Pain doctors and functional doctors usually are the ones that prescribe it.
I was diagnosed with fibromyalgia in 2004, but I didn’t really believe it. Over the last 20 years many things in my body are resolved by surgery and total joint replacements in my spine and my hips. When I can exercise, I can reduce the pain. About nine months ago I started having horrid sciatic/IT band/outside the knee/shin or peroneal pain/top of the foot/big toe along one leg, pain. I stopped sleeping and was exhausted. We did locate where this pain emanates and it’s from my spine. The Cortizone shot worked for one month 100% and then that was it. The sleepless nights started back with all the pain. My spine surgeon said I was too early For another surgery in my lumbar spine where the nerve pains are the worst my neck and shoulder pains, back and arms was reduced after I had cervical spine surgery-two of them. What I’m trying to say is that my fibromyalgia was due to my spine, degenerating and causing nerve pain Throughout the rest of my body. I’m at a point where exercise was the only thing that helped. First day I recommitted myself to exercise was for five minutes. The next day it was 30 minutes the next day it was 60 minutes and somewhere within that first week I got to 90 minutes on my stationary bike. Today three months later I’m at 100 minutes. Then I walk twice a day to take the dog out. The key for me was an exercise program and being committed to it. In 2004 when I was diagnosed with fibromyalgia, what became clear was that it was a lack of adequate breathing, bringing oxygen to all my muscles and nerves to bring pain relief. I started doing things like acupuncture and yoga and it really helped. I am 68 now and what I found over 2025 years of having this condition is that it always comes back to things that are a pain in the ass, but they work so if I want to stay off nerve medications and opioids For the most part, I have to have a strong exercise program in place. The doctors don’t beat you over the head with exercise. They hand out medication because people don’t wanna do the exercise. I’ve been on low-dose opioid for 25 years.
What I know from all these years of having fibromyalgia is that even when I do simple deep breathing exercises if that’s all I can do if I do them in a disciplined way, they relieve the pain. You have to be able to do any kind of exercise in a safe and stable manner. I have a garage filled with canes and walkers and all kinds of stabilizers that I’ve needed at one point or the other to do something called exercise even if it’s breathing and gracefully moving my arms around it helps my fibromyalgia. Good luck.
Hi, I choke all the time and I have projectile vomiting at times. I think that if they've ruled out reflux then you likely have Plummer Vincent Syndrome. You need a motility study and have your spincters (the set of muscles that are found in the rectum, throat, in parts of the lungs and so many other places) checked to see if they are working ok ..... Different meds can trigger problems as can taking meds at the same time of the day regularly....at least in my case. Good luck to you!! God bless and know that you are not alone!!
Thank you so much for this detailed response to Jadene and others. I have just begun to try to address worsening pain in my left hip and leg, sciatic nerve, knee joints and lower back muscles. This pain, which is clearly all connected, began to get worse during this past year. Like many others posting here, have had a struggle getting medical personnel to respond appropriately to my pain. I have been to physical therapy, want to start again, had an x-ray, visited an orthopedic surgeon, who clearly just wanted to jump to hip replacement, which I do not want to do except as a last resort. I am going to start a new supplement, and will see if that provides any relief. For some reason, my providers seem very resistant to scheduling an MRI, which might reveal more information about tissue damage. I continue the quest to get back to a more normal, active life. Best wishes to everyone here struggling with chronic pain.
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1 ReactionSame thing here. To much B6 and, or becoming intolerant of gabapentin will produce a big increase in neuropathy and cramps in your feet and extreme leg weakness. I quit both of them and returned to normal neuropathy. Found by accident that if I mix 1/4 teaspoon of baking soda with 3 oz. Of water after each meal it not only helped stomach problems , it also reduced neuropathy. Any type of machine vibration on your feet also helps. At night I rub my feet and legs with aspercreem with lidocaine, take 2 ibuprofen and 1 co q 10 and most of the time the neuropathy is minimal. Trial and error. Good luck.
@megroberts
I would recommend pushing for an orthopedic spine specialist to get a lumbar spine MRI and the hip specialist to get you an MRI of your hips/pelvis. You could have soft tissue injury/damage. X-ray alone will not show this.
For example, I have spinal stenosis, degenerative disc disease and neurogenic claudication causing all sorts of symptoms from low back to feet. I also have hip/upper thigh pain that did not show a joint issue with X-ray alone but did show I have bilateral gluteal tendinopathy and bilateral partial high grade hamstring tears (not sure how I got this) that is contributing to pain.
Surgery may be required as a last resort but they should try everything conservative at first (PT, pain relievers, cortisone injections, ice/heat/lidocaine pain patches, nerve pain cream, Voltaren gel for inflammation of joints/muscle tissue, etc.). At times, medication for arthritis/nerve pain/depression due to chronic pain can help (like Cymbalta/duloxetine). A psychologist specializing in chronic pain patients can also help.
Do not stop advocating for your best health and quality of life as possible!
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1 ReactionThank you and I will look into this
Thank you for your input. I did always exercise for the fibromyalgia up until my legs have gone bad. But I do physical therapy and do what they recommend on the days I don't go there
Thank you so much! I will be following your advice. I am just 70, am retiring from my academic position, and am a professional theatre artist who has done a lot of movement work, and a lot of physical labor that takes its toll on the body over decades and decades. I don't intend, however, to let chronic pain from osteoarthritis and muscle/tendon/neuropathy cause my mobility to become severely impacted. I intend to get to the bottom of the root causes of my symptoms and address them. Your information and input is really appreciated!
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2 ReactionsForgot to suggest you try MFR therapy, which stands for deep myofascial tissue release that might really give you a boost! Try a couple different therapists until you get to your best one! It resets your body and allows for better circulation to the muscles and better mechanics. There’s a section here at the Mayo Clinic forum online where you can read all about it and you can research it online, but it might be a really good thing for you to try. I go twice a month.