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chronic Radiating Upper Leg Pain Since Fusions #Fibromyalgia #NervePains #leg pain#CentralSensitizationSyndrome

Help! Please! For over 18 months, I have had debilitating sciatic nerve pain radiating from my L5 on down to my butt, side of thighs and usually stopping at the knees. I have fibromyalgia, central sensitization syndrome, RA, OA, degenerative disc disease, and have had four spine surgeries including L2-4 fusion. Since about 10 months after my 2018 addition of L2-3 to the L3-4 fusion, I started experiencing severe pain above and below the fusion. Then it shifted into the leg patterns. Since a March RF lesioning, on the left side, the pain pattern there turned to various forms of parasthesia, from tingling to numbness to on fire, to stabbing, to freezing….but now it wraps to halfway around the front of the leg instead of the back. Sometimes, I get groin pain on either side. At its worst, the pain has gone down to my toes, but not always to the same toes! You get it….there is NO pattern!

Worst…I’ve had continued pain treatments, have to take T4 with Tramadol too just to sleep, and have had every test in the book, including CT, two MRIs, and even an EMG. The best guess my surgeon or anyone else has is my fibromyalgia, my RA, my degenerative disc disease and facet arthropy…in other words, no one knows. I recovered well from my fusion, but tripped over a circular saw in our basement, tearing all ligaments in my right toes, to start this cycle.

Anyone have a similar set of symptoms? I believe the Fibromyalgia is part of it, since I have to use pillows to support my arms when I sleep on my sides, and can’t even stand most sheets touching it. So far, my only help have been the two ketamine infusions I had this month. All help appreciated! At least no Dr has suggested its “all in my head”!

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Do you have back pain that prevents you from cleaning??

"1. Timer - Give yourself realistic time expectations. Don't over do it.

2. Stand proud -Military style. This position will actually help you hold the vaccum correctly . By doing this, it won't make you overuse or strain muscles that are overcompensating for your weaker muscles.

Also, I've learned if you're sitting often, your muscles are weak, strained, and def not used properly. It makes it even harder to do daily tasks. (I have this problem - I sit alll day for work, I've been doing active, low impact yoga called gravity yoga to help offset this problem and it HELPS SO MUCH).

3. Amazon - The imitation robo(not the brand irobot) is pricy, but it's really worth it. You don't have to do a thing! It works way better.

4. There are tons of triggers of nerve pain. So, working with a physical therapist can help a lot.

a. Stimlate the vagus nerve in your body
Increase dopamine (those with chronic pain have low dopamine. So, increased dopamine = less pain according to many studies)

One of the best nerve pain meds with (no serious side effects short or long term) is Low dose naltrexone too. It's compounded and not widely known because it's generic. Check out more info and talk with your doctor.

5. CBD products. Make sure to buy one from a reputable site that has 3rd party testing to prove it's actually CBD and not other carrier oils.
Also, there are many different types, so find a ratio that works for you.
*As always do your own research and chat with your medical team.


Is it possible Ritalin as a child is the source of some of my issues?

I got diagnosed with ADHD as a five year old right after my dad passed. I realize now I was just mourning not dealing with ADHD. I was on Ritalin twice a day for three years so kindergarten until 2nd grade. I just wonder if this is the basis of some of my neurological issues epilepsy medication helps with my pain. I have a series of GI issues and I’ve heard there are more neurons in your GI system than your brain. I’ve never felt comfortable bringing this up to a doctor. #Nervedamage #NervePains #Ritalin #Fibromyaliga #BackPain


First post 😊

So I posted my first thought but I didn’t add it to a specific page which is why I’m sharing the link on here 😊 if anyone can go relate to any of it, I’d love to know more! Still undiagnosed
#ChronicPain #NervePains #MuscleDysfunction


Still undiagnosed

Okay so I don’t really know how this all works - I’m always reading other people’s posts but I’ve never done one myself 😳
I’ve dealt with different types of pain (nerve, muscle, joint) for a number of years now and I’ve recently been registered as disabled.

However, according to my most recent consultant, I’m an ‘unusual lady’. After having test after test, including a muscle biopsy, I’m still undiagnosed.

A few conditions have been ‘mentioned’:
- Myositis
- Mitochondrial disease
- Lupus
- MS
...and those are just the ones I can remember!

One of the more difficult symptoms to explain is the high level of muscle weakness . This is the only way I’ve managed to describe it to doctors:

Imagine running to the top of the Eiffel Tower and, rather than taking a break at the top, immediately start running back down. Then imagine someone asking you to walk 5 metres on flat ground, as soon as you get to the bottom. That’s what everyday walking feels like for me.

Don’t know if anyone has similar experiences - just thought I’d post & see! #Myositis #MitochondrialDisease #Lupus #NervePains #MuscleDysfunction #Jointpain #MultipleSclerosis


Hey, it’s been a while

A lot has happened. I’ve gone from going on hogs up and down my street in September, to full time using a wheelchair. My left leg is completely paralyzed, and my right one has electrical pain in it. I can’t use either. I’ve lost who I was, I’ve lost my friends. I’ve lost my hobbies, which included competing with my dog and running. The only thing I have left is guitar which is also going down the drain because I am losing the feeling in my left arm. They still haven’t figured out what is wrong. I have no idea what to do.

#WheelchairUsers #Wheelchair #Wheelchairs #WheelchairUser #helpneeded #NervePains #Nervedamage

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End of the month routine for a #ChronicIllness sufferer. This isn’t even all I take as I need to buy three of my vitamins. I’m 23 in two months. I have #IntracranialHypertension, #Fibromyalgia, #Scheuermann, #NervePains along with an array of other things that make it hard to function including a new chronic pain that had me in hospital for 4 weeks. I have #Depression, #Anxiety and undiagnosed #BorderlinePersonalityDisorder (My doctors and others believe this but getting it diagnosed is impossible). I’m already so beyond exhausted how am meant to keep going? I am trying but it’s also hard that no one fully gets it, some of my family have pain and mental health issues but not as many as me on top of each other and they say they understand but they really don’t and yeah. I just needed a vent. But yeah I’m over it. so much.

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Study for Icarus 2019 #Art #ArtTherapy #ChronicPain #NervePains #Disability

I managed to fall down two steps yesterday. Not far for some but it has really jarred my neck and the arm I used to break my fall. So today I’m in a lot of pain and having to get the morphine out. So here’s a piece from earlier this year, the title gives a clue and the burning nerve pain you may have experience of. Still smiling though 😊 #Falling #spinaltrauma #ouch #Disability #ArtTherapy #Burningpain #mobility #Arthritis #EDSAwareness


Avoid stress #Stress

While feeling like I have been hit like a freight train, pain running rampid, and no for sure cause they say to avoid stress. Well, I work in a pharmacy (stress), single mom (stress to provide), and now my daughter's school principal thought it was ok for some kid to grab my daughter's chest and not call me (huge stress). I am furious! My daughter should feel safe and secure in school. The boy has gotten no punishment. No he is not the athlete. My daughter is. So after a week and a half I emailed the superintendent. He called me that night. He was not happy. He assured me that the principal will be calling me. Someone has to stand up for her daughters no matter how much it hurts. #Stress #Antibullying #donttouchmydaughter #Pain #NervePains #pharmacy

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