Last reply 4 months ago
Too Fatigued to Keep Looking for Answers

I feel incredibly confused by what has been going on in my body, I was relatively healthy up until about 2 years ago when everything suddenly got much worse. However, I’ve been looking back into my past lately and realizing that I’ve had some of these symptoms for years, but they would happen so infrequently or were so mild I was never taken seriously.
I’m 26 now and have been having pretty severe back pain since high school. This started to get worse in university and afterwards. 2 years ago I started getting trigeminal neuralgia and there was a point where I couldn’t open my mouth due to the pain and after that everything got worse and worse. I experience nerve and other types of pain all over my body and it seems like it’ll flare up in one spot and travel or spread from there. Sometimes my entire body hurts. I’m fatigued more easily, I get crazy night sweats, I can’t get a good night’s sleep and I get randomly nauseated, especially when I get overheated (and I’m usually running really hot or have a chill). I get weird sensations in my body and lately I’ve become more concerned with feeling numbness and tingling, although it’s mild.
I was diagnosed with fibromyalgia by my family doc and trialed like 5 different medications, none of which offered any relief. The biggest success I’ve had is by taking myself to a medical marijuana doctor. I can tell within hours if I’ve forgotten to take my CBD oil, this is the only thing I’ve found that helps besides THC as well.
I feel like every other day I’m googling my symptoms and it’s telling me to look into MS. I’ve researched all these weird joint and immune disorders that have similar symptoms despite knowing I shouldn’t use Google to diagnose myself but I desperately want to know what’s wrong with me. I don’t feel like most medical professionals I’ve dealt with take me seriously. Before the CBD oil I found myself in so much pain I could barely get out of bed. I found myself understanding on a different level why doctor assisted death should be available to those who need it. I’m terrified of getting that bad again or worse.
I don’t know where to start. There’s an MS clinic offered by my city’s hospital but I’m still not completely convinced this isn’t all in my head despite how bad it gets. I feel like the symptoms change day to day if not from morning to night. Which makes it so hard to even explain to people what’s going on with me.
I feel like even if it’s not MS you all are likely to understand my situation of having a million horrible, confusing and changing symptoms. I don’t even know what I’m asking with this post but any advice or anything would be appreciated!

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4 months ago

Id get an mri scan done see if they can see any lesions or a lunbar puncture but with whats going on it might br difficuilt

4 months ago

Hi @katharina_garland and welcome.

Your tale will resonate with a fair few of us. It would be ideal if we could go to the Doctor and walk out with a definitive diagnosis. However, our bodies a quite complex and our Doctors aren’t magicians. And, our GPs are just that, General Practitioners. So jacks of all trades and masters of none.

Symptoms considered in isolation are the way Doctors may try and diagnose us. Then it becomes trial and error whether the prescribed drugs work. It’s not that feasible to consider the wider picture in a 10 minute appointment.

Doctors rely on results from tests and our answers to their questions. The diagnosis of most complicated conditions is a case of eliminating the probables and investigating the possibles.

You need to keep talking to the medical professionals, so that they are aware that prescribed treatments aren’t working. It’s also the opportunity to pose questions about a diagnosis review.

We have to make things happen.

Hope this helps

4 months ago

I must encourage people to check out Aaron Boster videos at least daily. This one, especially on diagnosis where the primary tool is the MRI looking for lesions but there are also other steps:

He has hundreds of videos on his playlist you can also search through:

MS is as much a matter of saying what it isn’t as definitively saying what it is…so it is hard to be patient as Drs are supposed to have quick and ready answers…unfortunately MS isn’t like that and the solution to symptoms or the disease itself can just be “fixed” through some wonder drug or treatment.

As said above you have to keep working the process and doing all you can do. Many of us keep a good MS diary of symptoms so we can keep perspective ourselves on how we have been and also what seems to work or cause issues whether that is something we ate or something we did. It is obvious some things make it worse like lack of sleep or stress. Some things make it better like a good diet, water and exercise. Of course no smoking as that increases issues like 25% in some studies.

Your profile doesn’t provide many details so uncertain what country or healthcare system you are in but that also plays a part in this whole puzzle – but you found us so that can help and using the little magnifying glass in the upper left you can search for previous discussions on topics-

Good luck and check out those resources-

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