Doctors Misdiagnosed This Woman's Pain for 18 Years | #Misdiagnosed | Health

Have you ever wanted to escape your own body? Jenna Birch, 28, has—thanks to the crippling pain she's experienced since childhood, which doctors misdiagnosed as fibromyalgia, along with irritable bowel syndrome and a menstrual disorder.

Read more about Jenna's story here:

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[begjon]

Thank you for sharing this. My wife's journey to an SFN diagnosis is so similar to your own, and hearing or reading the stories of others with the condition, like you, reminds her that she's not alone.

[marssmith]

For anyone watching this in 2023, I just went to a rheumatologist. She told me they use to diagnose people with fibromyalgia based on a point test, but that is no longer part of the criteria. Fibromyalgia is for people where nothing else fits. The criteria for it is limited. There is no blood test and now there is no physical point test.

[proudindian]

Never stop being your advocate, great quote. Thanks for this video, I needed to see this.

[C--Hercules]

Mine was misdiagnosed for over 20 years. Finally during Covid they sent three biopsies to a lab in New York and it came back positive for small fiber neuropathy. If you have fibromyalgia, maybe you don’t! You should have these biopsies performed. I wish the best for you.

[powerface]

I have been living in HELL, since 2007, I finally got a diagnosis from the #1 Neurologist in MI in 2011, "Severe Progressive Idiopathic Small Fiber Neuropathy". I tried Lyrica and every other Anti-Depressant they try to use as Pain Medicine, it didn't touch the pain and made me feel like a Zombie. I tried everything they asked me too and the only thing that gave me any type of relief was extended release Morphine along with short acting Oxycodone for break through pain or pain spikes. My dosage has never changed since I started using them almost 10 years ago. I feel my disease has outgrown the dosage. Death at this point, will be mercy. The amount of pain I live in is almost to much to bear, my Wife and kids and Grandkids are what make me force my way through each pain filled day. The mornings are the worst and I forgot what sleeping is like. I never get deep sleep, it even hurts to lay down. . . . Please God, please help them find a cure so those of us suffering can stop hurting and go back to work! Best wishes to all suffering. <3

[soniaalonzo]

I’m sorry it took soooo long for your diagnosis. It took a little over three years for my diagnosis. I saw every specialist and went to ER a couple of times. Only my neurologist listened and if it wasn’t for Covid pneumonia that i was referred to a pulmonologist, i wouldn’t have had a tilt table test that started the process seeing a specialist in multiple system atrophy who made the diagnosis. It was three years of pain, super extreme fatigue, extreme lightheadedness, dizziness, weakness…

[AASA]

My son fell off the bike when he was 8 years old, and the bicycle handles rammed into his chest area. Ever since then he is very sensitive to touch in that area, he gets irritated by seatbelts, buttons on a shirt or a high collar. He is now 17 and applying to colleges but he’s constantly disrupted by pain in chest area. The sensitivity is now pain, the pain is distracting 5:03 him and causing a lot of distress. My son has dreams to be a Dr and is very high achieving with a great moral character… but this pain is really upsetting him. His neurologist told him based on his symptoms it is small fiber neuropathy… and that he needs to take B-complex and Magnesium… we are confused and at a loss…if anyone reading this can advise it will be extremely appreciated. ❤️

[DrRodneyMcDermott]

Brilliant information. Thanks for sharing.

[dinahconnell]

I also have SFN and I have been to many doctors and used many meds. Nothing works. I also have fibromyalgia. I am in constant pain and that has led to my severe depression. 😢

[elsablue]

Anyone try dynamic neural retraining system? To retrain your brain the limbic system can get stuck in a fight or flight process constantly for years making it impossible to heal. So many people have gotten well this way dnrs.

[Freeazabird]

Am I the only one with this condition, who thinks to themselves after watching every single pain story on YouTube, “goshhh I wish I felt as good as you look”? Wtf

[elsablue]

Problem is 40 years here of lyme and so many diagnoses I can't count. Encephalopathy makes it hard to advocate the painful neuropathy is unbearable feels like I've walked through the snow and ice without shoes and socks no relief except sometimes oxycodone and heating pad. I can't do it anymore.im trying to get more answers but it's so hard to even get to the doctor.

[etfvfzq]

I was in the same boat as this young lady. It was super frustrating since most doctors only thought I should have pain in the damaged areas of my spine, knee and ankle all of which have been operated on. A new Dr sent biopsy out which showed what the other nerve tests wouldn’t show. I was fortunate to have some believe me snd recommend a med and supplement which helped alot

[Clairebearthegoodfinder]

I was diagnosed with fibromyalgia in 2005 at the UofM in Auburn. I have been down a long road. No matter what the issue was they blamed Fibromyalgia. I was finally so debilitated and I had 10 MRI’s I saw numerous doctors and finally displaying MS Symptoms, specifically the MS Hug I got sent to a neurologist. Omg I had anemia, arthritis, fibromyalgia, MECFS, 3 pinched nerves and disc problems in all three spinal areas CTL, Carpal tunnel both hands, osteoporosis, and more but the big one (present at birth) Neuromuscular Scoliosis 😢. I went into shock 😳 I had seen so many doctors. So I am just saying make sure you know the whole story. I had 5 medically necessary surgeries and changed some bad habits and I am doing much better. But all those things are NOT fibromyalgia so I took the symptoms surgically apart and attacked each issue or pain areas. Well the pain is everywhere 😂😂😂 but anyway I just thought I would share. I am now good day/bad day but its better than being in bed all day. Good luck its a struggle 😘🤗🫶

[_Junebug]

I’m a 30 year old female and finally got diagnosed with small fiber neuropathy, CIDP, and fibromyalgia. I’ve currently been on tramadol 50mg 2 times a day for about two months going on 3. At first it helped like 70% but now Its not enough and I’m tapering off because of the potential long term side effects of Alzheimer’s and Parkinson’s disease. I got prescribed lyrica but I don’t want to take it because of the terrible side effects. I’m waiting to see if I get the IVIG approved. I hate how much my life has changed and I can’t even work nor get disability. My last option is fasting and letting my body repair itself. If that doesn’t work I’m turning to God. He’s healed me before and I know he can do it again. I don’t want to be hooked on opiates for the rest of my life or continue going years with chronic pain.

[kelviannaepperson]

on the same day as my skin biopsy my neurologist told me that I had vitamin B6 toxicity which I found from Dr. Oaklander is a cause of small fiber polyneuropathy. I also have cerebral palsy that I have been dealing with all my life but this new pain is hard and it makes my preexisting chronic pain worse. Before the biopsy I had a second EMG where the doctor told I have small fiber polyneuropathy.

[Blueforyou]

However, the symptoms you describe are much more consistent with fibromyalgia than with SFN. Chronic pain in various muscles across the body is typical for that. Burning pain (after a previous period of discomfort and numbness) especially in the feet and hands, which continues to spread, is typical of SFN. I'm not surprised about the misdiagnosis.. Thanks for your story. Stay strong - and all the best for all of us suffering from sfn or whatever

[keishamurray]

I was dismissed for years before getting a SFN diagnosis. I was first diagnosed with "migraines" and "idiopathic" gastroparesis. Diagnosed years apart and both treated as final diagnoses. They treat SFN the same way. They say it's "idiopathic" even though they only ran a handful of tests for common causes of SFN. I don't think that's the end of the road. Treating the symptoms of SFN does not address why or how the nerves are being damaged. If the underlying cause can be determined and treated, the nerves can repair themselves. Small fiber nerves continue to grow and regenerate throughout life. I hate that we as patients have to basically research and diagnose ourselves and then fight to get a doctor to take us seriously.

[Nicolalouisej]

Did anyone who tested positive after a biopsy test negative on a nerve conduction test?

[annam]

Any side effects u get from lyrica I'm not on any medication right now and I cry everyday in pain and so far the medication I tried does not work at all I haven't tried lyrica