Doctors Misdiagnosed This Woman's Pain for 18 Years |

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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[@Mars-oc2gq]

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.

[@YTStoleMyUsername]

I have read this too. NIH will confirm the trigger point / "pressure test" is an outdated diagnostic criteria. It's not even necessarily a diagnosis of exclusion, generally you just have to match the symptoms. There is a journal article in the Oxford Academic "There is no diagnosis of exclusion in rheumatology" that explains why it is not necessary to run every test in the book to come to a diagnosis. I'm going to my doctor in a couple weeks hoping just to get a diagnosis of fibro so I can get accommodations from work, but I don't want to go through a bunch of expensive tests. I don't know how I'll react if they poke and prod me, but I hate being told I don't have something when I know I do. I was told I don't have TMJ when I have jaw pain, clicking, and headaches due to shifting & extracted teeth that haven't been replaced for years. All because the dentist didn't feel the click on one try. So personally I feel patients really need to advocate for themselves when they know their symptoms & are educated on what their concerns are.

[@JennySimon206]

Because Fibromyalgia doesn't exist. It's what they give u when there's nothing else they can find. They have been testing Fibro patients for SFN and are finding most of them have SFN.

[@begjon13]

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.

[@proudindian762]

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

[@powerface71]

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.

[@powerface71]

@@Rollwithit699 It is so awful. Thank you for the kind words. I hope you have pain free days over these holidays! God bless you!

[@jimmock1155]

I’m right there with you. 67 years old male. Fit. Active. Then this. 15 years. Every treatment and medication option explored. I need to die now.

[@thacryinggame]

Me too. Doctors dont care about us

[@Truerealism747]

@@jimmock1155 any luck with.tms Dr schubiner

[@kelviannaepperson3677]

My neurologist eventually told me I was born with sfn too I also have cerebral palsy. Now as I look back it was 2006 I was 11 and I was walking on the track and suddenly couldn't feel my feet on the ground and my feet wound be moving but it felt like I was just above the ground I told my friends but I didn't think to tell doctors or anyone until I was 26 and the numbness affected my mobility. I already don't walk normal due to cp but the numbness had increased my risk of falling. I got my own cane.

[@C-130-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.

[@keilacuriels1656]

How you doing now ? What is your treatment ?

[@springg1402]

I Have Both Fibromyalgia and Small Fiber Neuropathy. 😪

[@Truerealism747]

@@springg1402 how do you tell.whats sfn

[@Rollwithit699]

​​@@Truerealism747 SFN is burning, electric zaps everywhere (jaws, lips, neck, back, private area, feet, ankles). Fibro felt more like a blow torch on neck and upper/lower back. Cramping muscles in hands and feet. Was diagnosed with fibromyalgia in 1992, then small fiber neuropathy last year. I may have both or maybe I was misdiagnosed in 1991, as I definitely have SFN now. Have you found anything that helps? Sleeping is nearly impossible and today being up and around was too painful, so I'm down again with my ice bags and gabapentin which barely helps anymore. I have to find help, not ready to be lying down, doing nothing for rest of my days. Any ideas?

[@Truerealism747]

@@Rollwithit699 well I've been looking at subconscious.mind Dr schubiner.also ime trying a tmj splint check out fybromyalgia tmj connection.also add Asperger's connection check out Dr lenz I've got these diagnosed since sins diagnosis little lated 26 years CFS 6 fybromyalgia which are same condition are you hypermobile I also have heds or hsd getting genetic testing for me I believe it's Asperger's add SPD as a child though didn't no then accident brought in the primed nervous system just list my mum to severe ms obvously had Asperger's undiagnosed hypomobility.are you in uk any help I can help I will u can sleep 24 hrs a day if let always have but awake just the same

[@soniaalonzo5134]

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…

[@DrRodneyMcDermott]

Brilliant information. Thanks for sharing.

[@Freeazabird]

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

[@clairebear1808]

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 😘🤗🫶

[@dinahconnell6947]

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. 😢

[@user-et7fv6fz6q]

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

[@Siegeclan34]

What med and supplement do you take?

[@Blueforyou66]

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

[@Truerealism747]

After previous period of discomfort does that mean accident

[@AASA76]

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. ❤️

[@lenoracrouch14]

Hi I was dx with sfn and I don't like medical due to side effects. My dr recommended magnesium glycinate, b-12 and Alpha lipoic acid.

[@JosieStev]

@@lenoracrouch14 Has it helped you?

[@deborahstrau711]

calmare therapy

[@kelviannaepperson3677]

B complex caused my vitamin B6 toxicity that is one of the causes of my sfn. My other cause is gene mutations.

[@keishamurray2711]

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.

[@keishamurray2711]

Part of the reason I think it took so long for my diagnosis was that I don't present with thr typical widespread pain. I have some pain but most often it is altered sensations including tingling and numbness, itching, hot or cold spots, vibrations, crawling or so many other weird things. I count my blessings that I don't have lots of pain, but the altered sensations and the autonomic symptoms are still a major issue.

[@_Junebug30]

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.

[@Pinkiev1]

31 years old too, please let me know how it went did you fast, the pain is unbelievable?

[@_Junebug30]

@@Pinkiev1 I still haven’t been given the IVIG don’t know why so I’m looking for another neurologist. I didn’t take the lyrica because of the potential edema side effects. I had neuromas in both of my feet, edema and torn ligaments so I can’t afford any more damage. Been on and off tramadol but is not taking the pain away. Currently fasting about 8 hours a day, no improvement in pain. I learned that you have to fast for several days for the body to repair itself, the process starts after day 3 but I haven’t tried it yet. The anger and depression and tiredness really stops me. I’m sorry you’re going through this too. I will keep you in prayers as well.

[@elsablue3646]

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.

[@ryans1623]

Im so sorry to hear about your situation, There is new studies out with mice that fasting repairs small fiber neuropathy 32-48 hours seems to be the target, look it up on u tube maybe might help.

[@thacryinggame]

Me too

[@thacryinggame]

I despise doctors they wont help me

[@elsablue3646]

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.

[@kelviannaepperson3677]

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.

[@angela1981]

I too have b6 toxicity. How did u lower ur b6 beside avoiding b6 supplements of course

[@kelviannaepperson3677]

@@angela1981 so far I've just been not taking B complex I'll have to test it again soon to see if it went down. The doctor told me that I have MTHFR gene mutations from each parent. I have cerebral palsy which is a neuro developmental disorder. As you know dealing with this new chronic pain is difficult

[@Siegeclan34]

Hello. How are you now? Have you tried any protocols to get the B6 toxicity down?

[@Siegeclan34]

​@angelavillalobos5130 Hello how are you now?

[@kelviannaepperson3677]

@Siegeclan34 doing good it come very once in a while now I'm pregnant it's going well. My CP has made me even slower

[@susanbeever5708]

Did you get to do all of the tests that Dr. Oaklander recommends to look for the underlying cause?

[@lulud7571]

Dr. Oaklander is really the best

[@trevorphillips467]

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

[@kelviannaepperson3677]

Yes

[@TheKEG2177]

I'm surprised this piece didn't at least touch upon immunoglobulin treatments, as an option to treat SFN.

[@greenlutra]

I have SFN and am waiting for IVig to hopefully be approved by insurance!

[@freecat1278]

I wasted almost an entire year because my doctor didn't understand how to do IVIG. He failed to adjust the dose when the treatment stopped working, so I didn't get any benefit. Waste of time & money.

[@summerdais325]

Thank you! It looks probably that I have small fiber neuropathy. Things have gotten pretty out of hand for all the reasons you mentioned. Early on I would get these weird symptoms checked. I have been diagnosed with fibromyalgia, chronic fatigue syndrome, lupus, show rents, crps, etc. I now I wonder if this was all of it. Smh

[@ryans1623]

One specialist said shes starting to think of sfn as an auto immune condition unto itself, which would mean IVIG would work for all cases instead of only the sfn that are secondary conditions to more well known auto immune disorders.

[@ryans1623]

@@summerdais325 The specialists are pointing to that more and more especially with fibromyalgia.

[@annam1905]

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

[@hollybuehrer5458]

Lyrics is just a reformulation of neurontin...great if you are female and want to continue with pain and sleep and gain weight!

[@RosalindPeters]

Lyrica has SO many potential side effects - please do research before you commit, as the longer you’re on it, the harder it is to get off x

[@theself-helpconnection3731]

DR.Joe Dispenza

[@freecat1278]

I had so much pain that I popped it in my mouth as soon as I got it. I got a fever & a dozen other symptoms right away. I caught another train back to the hospital & went to the ER.

[@kelviannaepperson3677]

I have gained weight on Lyrica. I am wondering if anyone has been having trouble sleeping. At night I get anxiety about how I will wake up because of the pain and numbness in the night Eben though I take Lyrica. I take naps when the fatigue lays me out but it doesn't feel normal numbness engulfs me

[@johnathanabrams8434]

Tender points are not a diagnostic tool for fibromyalgia anymore.

[@claraangulo1880]

It would be awesome to learn how is she doing after a year! My dr. Refuses to give me referral for a neurologist and I don’t have time money to go private! So waiting and waiting with no pain relief. 😒

[@pennyiuliano7604]

Change doctor 👩‍⚕️

[@claraangulo1880]

@@pennyiuliano7604 I did go private. Not a lot of help and expensive. I’m now giving a try to LDN.

[@Truerealism747]

@@claraangulo1880 ldn hasn't helped me at 6 months though helped IBS where is your pain?

[@emo333vampire]

how is LDN for you?

[@danielmaldonado3945]

@@claraangulo1880how are you doing now?

[@annettekowalczyk3008]

Medicine is based on men so medicine needs to admit theyre wrong and update their guidelines

[@sleepisthecousinofdeath7395]

Ah yes, the mens fault once again.

[@propbraker]

I’ve dealt with a lot of snotty women doctors in my day, so there’s that…..

[@JimmyGunXD556]

I clicked on this video as dogs and other pets can cause unidentifiable problems. Animals are the main route of health issues.

[@katiedangelo404]

Im 30 years into my qdult life ive had pain my whole life. Ive heard it all including being put in a psych ward when i didnt want drugs... i wanted imaging... Even with a diagnosis it was dismissed by all tge nurologists i saw... Mychildren show symptoms.... i need to find yhe answers... Lyrica doesnt help... tramadol is the only med that helps. I use a lot of mind over matter and non medical options.... The medical community gave me complex ptsd

[@kelviannaepperson3677]

After I stopped taking Lyrica my doctor put me on metanx I found out that I have MTHFR gene mutations. The bad thing is he said I have to take metanx for the rest of my life and I don't even know if it's helping anything. I want to have children soon and I was told that the gene mutations I have could cause them to have autism which I'm not afraid of we'll be a neurodivergent family then but what I'm scared of is that premature babies run in my family and I have cerebral palsy I don't want my children to go through this chronic pain that alone sends you into depression.

[@katiedangelo404]

@@kelviannaepperson3677 my daughter shows all my symptoms and at a much younger age I'd more advanced then I was I think... she has decided not to have biological children. Being neuro diverse isn't a big deal if your raised by people that understand and respect your differences... but passing on this pain knowingly, seems cruel.... so as sad as it makes me I support her choice for no offspring. Your gene mutation made me laugh because of the initials.... seems appropriate though... you got the motherf'cker gene mutation lolololololololol

[@kelviannaepperson3677]

@@katiedangelo404 I'm sorry but I understand my best friend chose not to have children for the same reason and my brother too. I had known I wanted to have kids at a young age but I didn't know if I could because of my cerebral palsy but meeting mothers with the same condition gave me hope. Now dealing with this and spending more time in bed I just don't know. I laughed at the gene too

[@Truerealism747]

@@kelviannaepperson3677 methocalbalmin vitns inject b12 and ldn

[@kelviannaepperson3677]

@@Truerealism747 oh I was wondering what I could take instead of metanx because it's a diabetes med and I don't have that and it's expensive

[@MoncureCoyote]

Low dose Naltrexone is my savior for the burning in my legs. Lyrics just puts me to sleep.

[@emo333vampire]

hello, how long have you been on LDN? i’m currently at 450mg Lyrica daily ☹️

[@MoncureCoyote]

@@emo333vampire ​​⁠hey. About two years. We slowly titrated up to 8mg per day. It is VERY effective. I was just diagnosed with Adrenal Insufficiency but was on it before that.

[@emo333vampire]

thank you for the reply! i’m hoping to ween off Lyrica and get an LDN rx from my ND. i’m sorry you have another diagnosis 💙

[@Bozewani]

i was labeled ocd odd bipolar depressed for enforcing human rights humanitarian criminal refugee law I got involved in teh darfur movement in my High school and I vowed revenge on Omar al bashir for that so i came up with a convoluted plan to putomar al bashir for the darfur genocide to prosecute someone for genocide requires going to the International Criminal Court they ask for apolitical science degree 4 years of experiecne and knowledge of the six un languages I was labeld schizophrenic for enforcing this I am not OCD ODD bipolar depressewd when I gave my high school teachers a crash course on the subject I got into court oF course I won the case They were stunned My other dream in life is to start an NGo for human rights in Africa so I decided my high school teachers a crash course on the African human rights system and They thought I was threatening and harassing them Unless you are telling me the african union is threatening there isnothing to frear I am not ocd oddbipolar depressesd yu don't understand how human rights humanitarian criminal refugee law so enforcing he rules of war (IHL) stopping rape torture genocide slavery is not a mental ilnness defendin g my wife and helping out refugees is now a mental illness) HEALING FROM ALL THOSE DISORDERS I WAS LABELED WITH

[@thisisthierry]

Did you ever took antibiotics? Fluoroquinolone….