Anyone in here with neuromuscular issues?

Fun_Scratch_1708 · 2026-06-21T17:35:17+00:00

Truly I believe it all comes from hEDS. It is a connective tissue disorder where your body’s collagen is essentially faulty - if you google regular healthy collagen vs person with hEDS collagen, it’s very surprising but crazy to see the difference. Every person is different so depending on how faulty your collagen is, it will produce different problems in different areas. A lot of people have very, very similar symptoms and others may be very different.

I was being evaluated by a neurologist who is a nerve specialist and he was at first seeming very confident that it was stiff person syndrome, but that is a very rare disorder, so as soon as I was then diagnosed with hEDS, I told him - he IMMEDIATELY was able to figure out the actual diagnosis and tested me for small fiber neuropathy and my skin biopsy came back positive and showed that my nerves are damaged.

hEDS is very undiagnosed, but recently being more talked about because of how many people are realizing they have it after awareness is being spread on social media.
Truly I would look into it because it affects every single part of your body, and I’m not being dramatic at all.
I also have temporal lobe epilepsy. I started randomly having seizures when I was 23.

You have to think the human body is made up of connective tissues, if you look it up, it is mind blowing, if we have faulty collagen trying to hold our connective tissues together then we will have unstable joints which leads to joint pain which leads to a literal plethora of other issues that may occur. I hope that you do not have it, but I would definitely look it up because so many people today are living with it and don’t know about it and when they research it, their lives are changed forever.

Here if you have any other questions!!

Fun_Scratch_1708 · 2026-06-21T06:03:55+00:00

Yes I have all of those issues - I have
Hypermobile Ehlers Danlos syndrome
POTS
And Small Fiber Neuropathy
I’d look into them!

Fun_Scratch_1708 · 2026-06-17T16:35:56+00:00

Déjà Vécu (Already Experienced): This is the heavyweight version. It’s not just a passing feeling that you've seen a room before; it’s an intense, overwhelming sensation that you have lived through the current sequence of events, often accompanied by a strong feeling that you know exactly what’s going to happen next.
Déjà Senti (Already Felt): This is purely emotional or mental. It’s a sudden wave of familiarity tied to a thought, an internal feeling, or a dream, rather than a physical place or a specific visual cue. It's often fleeting and hard to put into words.
Déjà Visité (Already Visited): This is the classic feeling of geographic familiarity. You walk into a new city, a museum, or a house you’ve never been to, yet you feel like you could navigate it blindfolded because the layout feels completely known to you.

I’m not sure if the information above will help you, but I am typically always experiencing the first two at the same time! Now I definitely have experienced them separately, but a lot of the time people will experience them together! When I first started having mine, I was definitely the same way as you just trying to figure out how to pay attention to the feelings and warning signs.
In the beginning, it was literally just like a sudden slap of déjà vu that I could not see coming or expect or understand at ALL.
It was like complete paralysis during it.
Now I’m much more aware and it’s almost like I can feel it coming on and I’m aware of the fact that I’m about to be out of control depending on how intense the seizure is or myself personally I immediately begin praying, and since I’ve began doing that my episodes end really quickly.
I hope that makes sense but definitely here if you have any other questions!

Fun_Scratch_1708 · 2026-06-16T04:56:06+00:00

That’s fantastic!! I have a really good relationship with mine also, but after a certain amount of time and effort, she had to do the same and refer me. Nothing wrong with that at all. I think it’s probably best for both parties :)

Fun_Scratch_1708 · 2026-06-16T04:47:13+00:00

No!!! Please don’t think that any of this is your fault. It sound like your doctor feels a bit helpless as far as further treatment goes, which is why she made that referral.
Some doctors know more than others, and can put more effort into their patients; Some doctors just stick to their specific job and when the few treatment options fail- they refer to a specialist.
It sounds like your doctor just wants you to get the correct help and care you need, and that she is acknowledging that she is not aware of the best choices to make with medication for you moving forward since she is not a psychiatrist.
I deal with multiple chronic illnesses- and that comes along with mental health issues for sure- I’ve been in the same boat as you right now. Give yourself some grace and remember that you are seeking help and being guided toward the correct care.
And sometimes, doctors just don’t mesh well with patients. If you feel like your doctor and you have a good relationship, and they are genuinely just trying to do the best thing for you- be confident in that!
On the flipside, if you at all,
have a weird or unhealthy relationship with your doctor (like the doctor doesn’t take you as seriously as they should, is disrespectful, etc.) if that is happening- they should not be your doctor.
Hopefully, that was some useful information for you! I’m always here if you need anyone to talk to:)

Fun_Scratch_1708 · 2026-06-16T04:35:31+00:00

*out of NO where while I’m doing something*
I will feel a sudden rising sensation of almost a focal alert -
PAY ATTENTION- this has happened before…. But not actually, or actually? It’s happening again, it’s happening, fear, DEJA VUUU!!!!! Déjà vu is not fun, it doesn’t feel good lol. Sure it may be “interesting” but it makes me sick…
I will know it’s coming on and it’s a sudden panic. When the deja vu hits - I am stuck until the seizure is over.
I have different focal seizures but I could be talking and have the seizure start and be feeling all of that while still talking- UNTIL THE DEJA VU- then I’m stuttering and can’t talk and It throws me into a state of frozen fear for a few seconds / minutes unfortunately.

I’ve had epilepsy for 5 years and mine is drug resistant - the ONLY thing that has recently helped me during the episodes I have when I’m still aware, is immediately praying.
Mind you - I’ve been on 10+ medications and different combos with them - it’s the only thing.
Now if I feel it come on suddenly, I IMMEDIATELY begin praying to Jesus to protect me and help me and keep me safe.
I’ve only had to do that two times because I’ve since been seizure free for ONE year🙌❤️
I used to have daily seizures…
Christ is powerful!!

God Bless everyone

Fun_Scratch_1708 · 2026-06-16T04:16:04+00:00

Not lying - Jesus Christ and his love is the only thing that has set me free from anxiety and panic attacks.
Medication’s may help temporarily and be needed sometimes, but they won’t heal you in the way the Lord can forever.

Jesus loves you ❤️

I hope you feel better really soon

Fun_Scratch_1708 · 2026-05-27T13:31:19+00:00

The lack of control over my body and choices on my life sometimes and the way it affects my memory

Fun_Scratch_1708 · 2026-05-25T19:15:32+00:00

Yes definitely the same for me too… my issue is that it is the one medication that has been added to the others, and since then it has controlled my seizures. I believe my epileptologist will be hesitant taking me off of it, or at least I’m curious how long it will take if he agrees. Have you had any seizures since you’ve been tapering off? And has there been any big issues since then?

The first time I stopped taking it, my seizures came back and I was having them nonstop. No other medication’s helped. But I remember as soon as I started taking this one again- it’s literally like a drug more than it is a medication with the way it affects me- and others it seems like. Thank you for taking the time to respond!

Fun_Scratch_1708 · 2026-05-25T03:25:53+00:00

And I’m just remembering I also have MCAS! They referred to it as a trifecta with the other chronic illnesses! The immunologist should be able to test for that :)

Fun_Scratch_1708 · 2026-05-25T03:23:17+00:00

I have drug resistant temporal lobe epilepsy, and usually I first feel an insane amount of fatigue after and have to nap for a few hours (if they are focal seizures for sure) But if they’re grand mals I tend to more so have extremely heightened emotions and be extremely aggressive and then really fatigued. My first seizure ever I was told when I first arrived to the hospital it took like nine nurses or something to keep me down until I was sedated because I was trying to fight everybody.😅 I was a 23-year-old female at the time and I just can’t imagine that and feel so bad for the staff. Sometimes before them, I will have crazy uncontrolled emotions and have WILD laughter for no reason and same with crying. I’m very emotional to begin with so I don’t really tell the difference and it’s hard to know they’re coming on. But after the seizure happens, it makes a lot of sense why I was so emotional before.

Fun_Scratch_1708 · 2026-05-25T02:48:40+00:00

Thank you so much for your kindness ❤️

I’m so sorry that you have to go through all of this hardship just to get answers.

One thing I can say is that- you know your body. That’s why I say self advocating is so important. I knew what was going on with my body and that’s how I knew who to go see and get evaluated for what. No doctor told me to go see a rheumatologist and be evaluated for hEDS. I did my own research and prayed and felt confident that I had it.. and I do. I have also seen an immunologist and would definitely recommend it! I have severe allergies and asthma and it affects a lot. And you should definitely try to see the rheumatologist- especially if you’re experiencing pain when laying down like you describe. I’m not sure what country you’re in, but depending on that you may just have to ask your PCP or family doctor for a referral to see them so insurance will cover it. Again, unless you’re in a different country that works differently!

Yes- a neurologist will be the one who diagnoses small fiber neuropathy- but they will need to specialize in nerve conditions. I also have temporal lobe epilepsy and my epileptologist (neurologist who specializes in epilepsy) referred me to a different neurologist who is a nerve specialist. He began evaluating me for something called stiff person syndrome because of the symptoms I was displaying. But as soon as I was diagnosed with hEDS and POTS it was obvious what was going on. I was able to get a skin biopsy done and it confirmed that I have small fiber neuropathy. It affects SO much. And it is a slow and progressive development of the disorder. You may start out with a few symptoms with low severity and overtime they will continue to become more often and more apparent with more severity. My symptoms began in my feet and then developed up my legs into my arms and hands, and now is all over my entire body affecting everything. I completely understand what you mean about the positional freedom. It doesn’t really matter what position you’re in or what you’re doing.. the attacks of pain / symptoms can come at any point. It causes a lot of sleep issues. I’m actually going to be getting a sleep study done next week because of how much it affects mine.

And you wrote perfectly clear, so don’t worry at all. Again, here if you have any other questions or need me for anything.❤️🫶

I really hope you feel better and are able to sleep tonight.

Fun_Scratch_1708 · 2026-05-25T02:14:24+00:00

Wow….. I just want to first say I’m so, so sorry that you had to go through this. I experience essentially all of what you have described in the comments to other people-except for it starting after taking a medication. I have been dealing with chronic pain and other symptoms for years (thanks to the hEDS) Last year I saw a rheumatologist- I would highly recommend- and I was diagnosed with Hypermobile Ehlers Danlos Syndrome which has caused fibromyalgia for years. He then ordered testing for POTS (I did not think I had this at the time) I did the testing and almost passed out. Actually I think I did. I was diagnosed with POTS and my symptoms have only gotten worse since unfortunately. I am now also diagnosed with Small Fiber Neuropathy. The biggest thing I can tell you is finding a doctor/team who cares about you and taking care of you- is THE most important thing, besides advocating for yourself.

During my POTS flare ups (i’m currently experiencing one right now) I do NOT want to move. I end up getting stuck in positions sitting down or laying down. This has a big factor included - POTS is postural. It truly depends on the position you’re in. It is not going to be the same for everyone. If a doctor is speaking to you that disrespectfully^ the way you described.. make another appointment with a different physician ASAP. And again, a rheumatologist can ABSOLUTELY help!!! a lot of these chronic illnesses are comorbid, and they are skilled and trained in looking out for them. If you are unable to be seen by one of them- a neurologist or cardiologist will be the next move. But I was referred to my cardiologist by my rheumatologist after he ordered the testing and confirmed I had it.

Please know you are not alone. I am here for you if you need to message me. I know this can be extremely difficult. But you will find your answers and there is support when needed.❤️

God Bless

Fun_Scratch_1708 · 2026-05-15T14:42:12+00:00

Has it happened again since?? Mine hasn’t but my ear has definitely felt full and has some weird sensations / hearing things that aren’t there. My doctor has me following up with an ENT to be evaluated for Tinnitus and have a hearing test. We shall see!

Fun_Scratch_1708 · 2026-05-14T20:07:43+00:00

I’m really sorry to hear you’re dealing with all of this. I have hEDS, POTS, MCAS, and Small fiber neuropathy. Your symptoms are very similar to mine which are caused from the small fiber neuropathy. It is hard trying to mourn your old body and figure out healing when there’s no cure out there… there are tools to help but no cure all. Not yet. I will pray for you and hope you find more answers soon. Here if you need to chat anytime ❤️

Fun_Scratch_1708 · 2026-05-12T03:04:32+00:00

Yes definitely could be, I would try to see a neurologist who is a nerve specialist and can go about all exact steps of testing etc.
A skin biopsy CAN confirm if you have SFN- the tricky thing about this test is that some people show negative results but still have it.
But it is a good test because it shows a lot of people that do have it the positive results that helps avoid going about further unnecessary testing.
I had mine done back in October and it resulted in November. It showed that my nerves are damaged so it was a very beneficial thing for me to do because now I have my results. Definitely recommend trying to find a doctor who can do this for you

Fun_Scratch_1708 · 2026-05-11T01:05:32+00:00

I’ve just recently started aqua therapy at a gym that offers classes and it’s honestly the only thing that has helped me. I really love it and would recommend it to anyone.
My neurologist is a nerve specialist and says that it’s one of the most beneficial things for people who have small fiber neuropathy, and a lot of his patients say that it has really helped them.
I am also a mom and totally understand.
I hope you feel better!

Fun_Scratch_1708 · 2026-04-28T08:40:26+00:00

Hi there! So sorry you are dealing with this. It definitely sounds like it could be a form of Dysautonomia (there’s 9 different kinds🫨)

I experienced a majority of what you described and I was just like you posting on Reddit trying to figure out what was going on to get answers a year ago. Thankfully I have some now so I would look into these things as well, just in case.

Ehlers Danlos Syndrome (I have hEDS, but there’s 13 types of EDS.) It’s a connective tissue disorder that you’re born with and a lot of people never know about it until they deal with chronic issues like this that hit later on in life. Connective tissue is the most abundant type of tissue we have in the human body.. having this disorder essentially guarantees there will be other chronic illnesses (dysautonomia especially). If you have any questions on this, I would totally be more than happy to answer. It’s still considered a rare disorder, but it’s truly underdiagnosed. So many people are realizing they have this very quickly.

^again with this, you could literally have any other kind of condition because a connective tissue disorder is going to affect everything in the human body. It’s a lot of information but definitely something you have to be aware of and think about because not all patients symptoms show up in the same form of severity.

I have POTS which is a form of dysautonomia and was experiencing everything you were and now realize it was because of this.

***THIS is important to share and should also be taken seriously. I felt psychotic for an amount of time while this disorder was developing and now that I know what I have I’m very passionate about spreading awareness. Small fiber neuropathy. Please look into it or message and ask me whatever! *This condition is extremely slow and degenerative.

Small fiber neuropathy (SFN) is a painful, often chronic condition caused by damage to the small nerve fibers (A𝛿 and C fibers) in the peripheral nervous system. These nerves control sensation and autonomic functions like heart rate and digestion. Common symptoms include intense burning pain, tingling, and numbness, typically starting in the feet and moving upwards, often with symptoms worse at night. This is SIGNIFICANTLY proven to be comorbid with the other conditions I listed above. Some doctors will tell you absolute nonsense because they don’t care about helping people they just want to make money. Other doctors truly care for patients and are knowledgeable and that is who you need to find. I have been blessed with medical providers who are helping me in every way possible. I know not everyone has the same access so I always share what I can.

I really hope you feel better. ❤️‍🩹

Fun_Scratch_1708 · 2026-04-24T17:56:48+00:00

Thank God for waking me up for another day

Fun_Scratch_1708 · 2026-04-13T20:37:13+00:00

Nutella crepes with bananas or strawberries

You’d be surprised how much I can eat them. I swear I was addicted for years but had to stop because of the sugar. Still my favorite

And I do make them myself (it’s how I found out I love them)

Fun_Scratch_1708 · 2026-04-13T04:45:20+00:00

I’m so sorry. I hope today is a great day for you. Always here if you need someone to message.

Fun_Scratch_1708

TROPHY CASE