Chronic Pain members - Welcome, please introduce yourself

I am 64 years old and have small fiber neuropathy pain that I have tried several antidepressants and anti seizure medications with no luck. I am looking for experiences that have and have not worked.

Hello @bah1959, I would like to add my welcome to Connect along with @erikas and others. The only weight bearing pain that I've had was when I had severe gout in my right foot. I was unable to walk or stand at the time. I found some related information that may be helpful since the X-ray did not show anything but then you mentioned also having 2 MRI's so it probably rules this out - "An occult fracture is one that does not appear well on an X-ray. A possible ... Even walking, or just putting weight on your leg may cause pain." - Possible Occult Fracture: https://www.urmc.rochester.edu/encyclopedia/content.aspx

@jenniferhunter may also have some experience or suggestions that she can share with you based on your symptoms.

Hello I am Kim and I also live in pain. I was diagnosed 3 yrs ago with Myotonia Congenita Which is your muscles don’t relax, I’m in constant contraction. My pain has just recently started. I am on a muscle relaxer and 800mg twice a day and 1200 mg at night of Gabapentin which neither of them are working. I am going back to the Mayo soon to make sure there is nothing else going on. My doctors here cannot help me as MC is a rare disease. I feel for all of you who suffer with pain. I too would like to know how to relieve it at least so I can sleep.
Kim

@bah1959 In your description, I don't see anything that talks about physical therapists looking at your pelvis alignment. I know from my experience, when my pelvis moves out of alignment, it effectively makes one leg "longer" and puts a lot of stress on one half of my lower back. It's exhausting to try to walk like this. It also causes sciatic pain and pain that can mimic a lumbar spine problem. This can happen when hip flexors are too tight too because that pulls the pelvis out of alignment. I've struggled with that because I could not bear weight for 3 months after I broke my ankle in May. I sat for 3 months before even trying to walk again and it pulled just trying to stand properly with good posture. It was tight enough that when I tried to walk, I was short strided because my leg wouldn't extend backward. Pelvis alignment also affects knee alignment. I know that when I feel pain on the inside of my knees, that my pelvis is off. My therapist can tell just by looking at me and how I am standing where something is misaligned. If knee misalignment is off, it puts more wear and tear on part of the joint which can lead to damage that could in time create a need for a joint replacement. That's why getting the body moving properly and in correct alignment is so important.

If you are feeling pain trying to bear weight, that pain can be generated anywhere along the path of that nerve from the spine to the leg and there are multiple places where muscles can entrap these nerves.

The other issue is that each surgery you have will create scar tissue and fascial scar tissue that restricts movement. The remedy for that is a physical therapist who does myofascial release, and this can help get a pelvis leveled in the correct position. Developing muscle strength will hold it there. With each of your specialists just looking at their piece of your puzzle, no one is looking at how things might interact on a bigger scale which is where an MFR therapist can help.

Here is a link that explains how pelvis dysfunction can create these issues. You may want to look at that before more procedures. If it helps, you may not need another procedure.
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
Here is our discussion about MFR where there is a lot of information with links on the first few pages.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Thank you for all the information! My PT did work on my pelvis as part of my treatment. I will still want to look at the links you sent though.

Thank you! @erikas, I have seen multiple specialists. 7 neurosurgeons. 5 Neurologists. 2 Rheumatologists. 3 Nephrologists. 4 Physical Therapists. 2 Orthopedic Surgeons. 3 Infectious Disease. 8 Psychologists. 1 Allergist. 2 Pain Management. And so much more.

I have had 15 years of unexplained symptoms and a rare disease (medullary sponge kidney) that I can’t find a local doctor to treat because no ones ever heard of it!

Upon a Mayo Neurologist learning the symptoms, (joint hypermobility, POTS, gross motor function intermittently lost, bowel issues, chronic widespread pain, burning in muscles during use, systemic weakness, recurrent infections, hypertension, menstrual complications, high risk pregnancy) we also discovered EDS as an underlying issue.

From my genes and family history it looks to be Vascular but we’re confirming with another genetic test.

I’m in a state of relief for answers but grieving because it’s not the “curable” answer I was hoping for.

V-EDS has a life expectancy avg between 48-51 years. My mom just had a stroke right at her 51 bday. Her brother died at 51 from his 4th heart attack. Her dad died at 65 from aortic aneurism. My son has clotting and bleeding issues. I can’t regulate my blood pressure or body temperature.

I haven’t worked in almost 4 months. I’m getting a bit hopeless at times. I woke up a couple days ago unable to walk normally again. It’s like my legs get stiff at the joints but wobbly and weak so I can’t get them to stay in place when I walk. I’ve nearly fallen several times but I’m usually latched on to my husbands arm.

My son is only 8 and complains of constant worsening joint pain. I can hardly take care of myself at times and the poor guy just wants to rest too. He probably also has von Wildebrands as well as inherited the EDS.

I just feel stuck. And one of my Mayo doctors think it’s fibromyalgia, but fibromyalgia is the symptoms that I’m feeling from the EDS. I feel like they are missing that point there... psychology pain clinic seems like it will try and keep me from thinking about the pain but it’s with every step I take. Every breath I breathe and more so on days that I can’t move my arms or walk, I DO need help. In days that I can, I certainly don’t go being lazy and asking for it but Thats the vibe I got from the consult with the psychology pain clinic.. is that they think I’m abusing my right to ask for help when I’m actually very independent and only ask for help when I truly can’t get my body to move with willpower.

So I’m overall just stressed about the situation and hope that I can get the right “treatment” and not keep going in circles with pain cycles and wrong diagnoses.

@faithgirl30 hi. Just following up to see if you made the switch from dilaudid to suboxone? Just curious to know the results. Hope all is well!

I have seen a neurosurgeon, not a neurologist. He is the one that suggested the spinal cord stimulator. I did just post something about scar tissue being a possible cause but I just pulled that one outta my...head. I am not sure how they diagnose something like that and I've been looking but can't find anything.

I have been diagnosed with significant small nerve neuropathy caused by prediabetes. I am currently in a lot of pain that increases with standing, sitting, walking any laying in bed. I have tried gabapentin, nortriptyline, Cymbalta with no luck. I am looking for conversations with people finding themselves in a similar position. The pain is increasing daily.

@magneticcenter Good morning, and welcome to Mayo Connect! We are not medical professionals here, but fellow patients/caregivers/family members who offer support and share our experiences.

I looked at your posting history, ad see you have already posted to the neuropathy group. That is an excellent start to getting answers to your questions! @johnbishop and @artscaping both have neuropathic issues, and may be able to share their experiences.

What does your endocrinologist have to say about the prediabetic pain? Have you looked at yoga, gentle exercise, or CBD? Under the diabetes group, there is a current discussion about neuropathy that you may be interested in: https://connect.mayoclinic.org/discussion/neuropathy-in-my-feet-and-legs/

Please come back and let me know if this is a help you you, and if you have more questions!
Ginger