Fibromyalgia is awful WHY DID I HAVE TO DEVELOP IT AT 18

[przeciwwymiotne]

It's been 2 years I'm 20 now.
The fact that I'm going to be ill for the majority of my life if I live an average lifespan is so depressing.
Most days I can just lay in bed and do nothing. Other times I can 'function' till like 4pm then I'm in agonising pain for the rest of the day.
My boyfriend carries me up and down the stairs. We barely have any money and idk if I'll be able to finish university or to hold a job.
This is due to the disability but also to my massive avoidance problems.
I just wanna peacefully die in my sleep

 

[Rainy_Cloud]

Im sorry, im curentlly 20 and they did susspect that and just ruled it out, nobody cares about my health and state, i sleep bad and barelly fuction and doctros dont help me because im young. i hope u manage to get on ur feet i feel how it is to constantly be in random pain even if we dont share same diagnosis(sorry for my grammar its gotton bad lately).
All the best

 

[guachinio]

Illnesses can be tragic enough to prevent you from doing things essential for survival, like working and studying. That leaves just one option: CBT

 

[carac]

Illnesses can be tragic enough to prevent you from doing things essential for survival, like working and studying. That leaves just one option: CBT

Well the other option is, if it is possible, to recover from your illness. A lot of people have successfully recovered from Fibromylagia

 

[Jarni]

Fibromyalgia is Small fiber neuropathy in most of cases (Drs are incompetent). SFN can be treated at least partially (totally too). Hopefully you could get skin biopsy to get a right diagnosis to begin with....

Small Fiber Neuropathy in Patients Meeting Diagnostic Criteria for Fibromyalgia - Corinthian Reference Lab

Fibromyalgia; Small fiber neuropathy; Epidermal nerve fiber density; Punch skin biopsy; ENFD

corinthianreferencelab.com

 

[Dark Window]

Sorry I don't know much about your issue. Is there anything that can be done about it?

 

[Catch-22]

Fibromyalgia is Small fiber neuropathy in most of cases (Drs are incompetent). SFN can be treated at least partially (totally too). Hopefully you could get skin biopsy to get a right diagnosis to begin with....

Small Fiber Neuropathy in Patients Meeting Diagnostic Criteria for Fibromyalgia - Corinthian Reference Lab

Fibromyalgia; Small fiber neuropathy; Epidermal nerve fiber density; Punch skin biopsy; ENFD

corinthianreferencelab.com

Actually fibromyalgia can be caused by many things.. after me being diagnosed with this decades ago I just found out last year that I have Lyme disease, Bartonella and a nasty thing called babesia. So that was the root cause and is in many cases for fibromyalgia. Seems like fibromyalgia is caused by trauma to the system. Viral, bacterial, parasitic and even something like mental or physical trauma or something like small fiber neuropathy. Small fiber neuropathy is sometimes caused by having Bartonella a coinfection of Lyme disease. It's always important to get down to the very root of all this. If someone asked me a year and a half ago if I had these infections I would have said absolutely not. I happen to go to a private doctor on a different issue and they thought they would test me and I turned out to be positive for all these things. I guess I've been carrying around probably since the age of two. Getting Western medicine to test you for these things is nearly impossible you have to go the private route. Then you have to wonder what causes the small fiber neuropathy. I'm not sure if I have SFN or not because my terrible government doctor they sent me to was too lazy to do a punch biopsy. He did test me for peripheral neuropathy and the test said that I have it but I'm not so sure that I don't have SFN. People are under the assumption that you can only get Lyme disease from a tick bite although you can get it several different ways you can even get it from your mother as she passes it to you when she's pregnant. Most of the time the mother has a healthy immune system and never knows. I'm sorry to hear you have SFN and I'm hoping you're getting treatment since I know it's reversible and peripheral neuropathy isn't. I've been told my peripheral neuropathy is from the Bartonella infection that I have.

So I do consider myself having fibromyalgia but I do believe in my case that it is caused by Lyme disease and co-infections. People told me to join and Lyme disease group on Facebook and when I did I couldn't believe that nearly 100% of the people on there were diagnosed with fibromyalgia for multiple sclerosis before they ever were diagnosed with Lyme disease. Most of them have small fiber neuropathy or peripheral neuropathy caused by these infections. I'm sure I got infected by a bite of something probably when I was camping as a child but if you ever been around any animals hiking camping it is possible to have these infections. The good news is if you're fairly young you can treat these infections and get rid of everything the bad news for me is I'm not young. Look at it like an onion having many layers and slowly start peeling away each one. Cuz even if you have Lyme disease and Co infections it's much more than just being infected by pathogens you have to strengthen your immune system and a lot of times work on trauma. That nasty thing called trauma messes up your immune system every time. I hope you can reverse your SFN and you can live a happy healthy life

 

[Jarni]

Actually fibromyalgia can be caused by many things.. after me being diagnosed with this decades ago I just found out last year that I have Lyme disease, Bartonella and a nasty thing called babesia. So that was the root cause and is in many cases for fibromyalgia. Seems like fibromyalgia is caused by trauma to the system. Viral, bacterial, parasitic and even something like mental or physical trauma or something like small fiber neuropathy. Small fiber neuropathy is sometimes caused by having Bartonella a coinfection of Lyme disease. It's always important to get down to the very root of all this. If someone asked me a year and a half ago if I had these infections I would have said absolutely not. I happen to go to a private doctor on a different issue and they thought they would test me and I turned out to be positive for all these things. I guess I've been carrying around probably since the age of two. Getting Western medicine to test you for these things is nearly impossible you have to go the private route. Then you have to wonder what causes the small fiber neuropathy. I'm not sure if I have SFN or not because my terrible government doctor they sent me to was too lazy to do a punch biopsy. He did test me for peripheral neuropathy and the test said that I have it but I'm not so sure that I don't have SFN. People are under the assumption that you can only get Lyme disease from a tick bite although you can get it several different ways you can even get it from your mother as she passes it to you when she's pregnant. Most of the time the mother has a healthy immune system and never knows. I'm sorry to hear you have SFN and I'm hoping you're getting treatment since I know it's reversible and peripheral neuropathy isn't. I've been told my peripheral neuropathy is from the Bartonella infection that I have.

So I do consider myself having fibromyalgia but I do believe in my case that it is caused by Lyme disease and co-infections. People told me to join and Lyme disease group on Facebook and when I did I couldn't believe that nearly 100% of the people on there were diagnosed with fibromyalgia for multiple sclerosis before they ever were diagnosed with Lyme disease. Most of them have small fiber neuropathy or peripheral neuropathy caused by these infections. I'm sure I got infected by a bite of something probably when I was camping as a child but if you ever been around any animals hiking camping it is possible to have these infections. The good news is if you're fairly young you can treat these infections and get rid of everything the bad news for me is I'm not young. Look at it like an onion having many layers and slowly start peeling away each one. Cuz even if you have Lyme disease and Co infections it's much more than just being infected by pathogens you have to strengthen your immune system and a lot of times work on trauma. That nasty thing called trauma messes up your immune system every time. I hope you can reverse your SFN and you can live a happy healthy life

Yes, I agree for the main idea. Infections are responsible for near all auto-immune problems. I have Long Covid for 4 years and SFN and other problems from this (lots of work made to fight persistent Sars2). So I understand all these struggles

But fibromyalgia is like FND (functional neuro disorder or rebranded hysteria) is an absence of diagnosis, just a cover for incompetent and lazy doctors. There is always a physical problem. Finding it is the first step... After this for sure a big work for finding the root cause could be done...
....

 

[pursuit29]

I'm so sorry to hear this. I also developed this along with other things at 20 due to a medication I was given. I would say before you give up on things. There are a lot of things to try out there. And lots and lots of things you wouldn't have even heard of and thought of when things started. Also keep in mind that doctors are a mixed bag. You should keep doctor hopping until you find one truly willing to go above and beyond to try to help you, even if the first 10 doctors suck and gaslight you etc there will be one there who will try and help.

Just as an example in the traditional manual for fibro they give out SNRI's like cymbalta, gabapentinoids, they ask you to do physical activity, things like that.

But there are new emerging things like low dose naltrexone which are helping some people a lot, people who nothing else worked for. And things which in severe cases some docs are willing to try like IVIG or plasmapheresis. Some other people have benefited also by doing things like the ketogenic or carnivore diet on their own or adding things as simple as magnesium or fish oil to their diets.

All I'm saying is in the beggining you may feel that there's nothing which can be done, especially if you have bad doctors, but do some research and you will find there's a lot of options before resigning to the disease.

 

[Ichigo]

It's been 2 years I'm 20 now.
The fact that I'm going to be ill for the majority of my life if I live an average lifespan is so depressing.
Most days I can just lay in bed and do nothing. Other times I can 'function' till like 4pm then I'm in agonising pain for the rest of the day.
My boyfriend carries me up and down the stairs. We barely have any money and idk if I'll be able to finish university or to hold a job.
This is due to the disability but also to my massive avoidance problems.
I just wanna peacefully die in my sleep

Your boyfriend sounds like a loving guy.