I'd love to talk about this and answer any question. I've had this condition for as long as I can remember, it's truly painful, it causes sudden fatigue and pain on my limbs only. When I was a kid, I grew up faster than most people usually do, so every doctor would say it was pain from growing up. I believed them but it's been years and it just gets worse. I've done countless blood tests, EMG, MRI on my head and a CT, every result came back normal. My doctor is now planning to send me to Barcelona to test for Siringomyelia, he also suspects it could be fibromyalgia, but says most of my symptoms don't make sense.
When you say you grew up faster what do you mean by that? You grew tall before your peers?
If you could go back in time what would you say to your younger self?
I hit puberty when I was 8, so yeah, I was much taller than my classmates and even found out some were making fun of me because I already had boobs at that age.
That's an interesting question I've never had before! If I could go back in time, I would tell myself my pain was real, because for years I used to believe it was all in my head. There was this day I had to skip school because my arm was hurting REALLY bad and I didn't know why, and my teacher said it wasn't a reason to skip school. It really hit me because I used to think everybody felt the same weird pain as I do, but I think younger me wouldn't be able to handle knowing I have a condition, so I wouldn't say much to my younger self about that!!
I have Syringomyelia and it doesn't sound like the symptoms of it. That's just a spinal MRI.
It sounds more like a Myositis.I have that too. Since you've had it from birth, I'd go with Juvenile Dermatomyositis. You might be affected more in your muscles and not the skin - which is called Polymyositis. A muscle biopsy can confirm that.
Something to look into, anyway. Good luck. I've been there. Any answer is better than no answer. :-)
Thank you!! My doctor wants to rule out syringomyelia and says he doesn't really think it's that because not every symptom matches it. I forgot to mention on the post but we're pretty sure the pain is in my nerves because sometimes I feel it right in it (example: sometimes instead of my arm hurting, only my ulnar nerve hurts) so we don't think it's a muscle pain, but we're trying everything!!
Have they checked your growth hormone and thought about micro adenomas on your pituitary? I had one and it didn’t show up on an MRI even with contrast because it was so small. I had different symptoms but there are lots of different types that mess with different hormones.
I know it sounds mad, but put all your blood work results and symptoms into Chat GPT and, WITH A CRITICAL EYE, ask it for suggestions. There’s a lot wrong with AI but, used sensibly, there’s a lot of information that can be useful too. I literally (correctly) diagnosed myself with Cushing’s Disease using a similar method and have now had brain surgery to correct it after fighting to be believed.
They didn't check it because now I'm growing up normally and not as fast as before, but at the time I was REALLY close to start taking meds to control my growth but didn't because it eventually stopped.
I have also found some conditions on chat gpt that my doctor later talked about! I'm not searching much about my potential condition now because these last few weeks the symptoms have been really bad, and usually I'm not scared or paranoid to search about what it could be but right now i feel like I shouldn't for a while so I don't get paranoid, but I'll look into it ty!!
If there’s something you suspect you might have, it’s really good for finding papers about outlying symptoms. So for example, I had neutrophilia which, at the time wasn’t seen as an indicator of Cushing’s disease but now is well known to be. I took list of references and papers to my doctor‘s appointment showing that, even though I didn’t fit the normal list of symptoms (or rather I had other, extra symptoms) it did fit the pattern for Cushing’s disease and new research was beginning to show that. It was enough to convince them to test me and that proved I had the pituitary tumour.
It might be worth you putting in your results and asking if this could fit the disease you’re looking at (I saw you mention another comment) and if ChatGPT can find any reputable scientific studies or papers regarding your symptoms and research showing they can be symptoms of the disease you’re considering. To do this, you can just put a screenshot of any blood tests, and doctors notes (reducting names if you want to) and it can read the images.
I know it’s really scary, for quite awhile they were convinced I had blood cancer or another aggressive cancer hidden somewhere in my body because that’s what neutrophilia at my levels normally means. However, while Cushing’s disease is serious, I’m now completely in remission and so much better. So many things can be fixed once they know what’s wrong.
I really recommend doing your own research because sometimes outlying symptoms can just be really random and doctors just don’t have the time to put in hours and hours of research per patient. For example, I had pain in my fingers and toes which I thought was a symptom but was actually caused by magnesium deficiency. Now, the magnesium deficiency was caused by Cushing’s disease but the pain itself wasn’t a direct symptom of Cushing’s, if that makes sense?!
Not a question but I have experienced something very similar to this. I also hit puberty rather early and got my period around 8, I was taller than my peers until high school.
I did have it worse as a child than now. I get excruciating pain in my joints some days and it gets worse at nights. I would rarely get it in my shins, most of the time it’s in my knees or elbows. When I was really young I remember having to take pain meds and use a blow dryer on my knees and the pain would ease a bit but never goes away until the next day.
As an adult I’ve been to the doctors run medical tests about any joint related problems, taken supplements, and exercise regularly and it still comes back from time to time. I never figured out the reason, either. Besides the pain it doesn’t seem to affect me in anyway, I can perform high intensity workouts without any problems and squat heavily without knee sleeves.
The only person that gave me some kind of closure to this regard was a Chinese herbal doctor that told me I had “dampness” and “cold air” in my knee and prescribed me a bunch of herbs that I took for a little while. But since I don’t get the pain that often now as an adult (maybe once a month or even less), I gave up on really sticking to the meds to be able to tell you if they worked (it was also timely to make and not pleasant to consume).
Acupuncture is really helpful with most conditions as well as Chinese herbal medicine as an adjunct to Western medicine.
My pain also didn't use to impact my daily routine as much, but nowadays it's SO BAD... I'm so glad you found something that worked! I used to try ice or warm stuff directly where it hurt, but didn't change anything unfortunately...
EDS? CRPS? Could be fibromyalgia that’s presenting atypically???
I've searched about those conditions and my doctor hasn't spoken about them yet, he says it looks like fibromyalgia but that some key symptoms aren't present, but I'm aware fibromyalgia is really different from person to person but I'm sure he has seen multiple patients with it, but yes it could be fibromyalgia presenting atypically!
Can you get a referral to a pain management program? They treat pain like the disease it is. They can help you alleviate your pain regardless of the cause.
I would love to try something like that! I have not tried it because I'm constantly getting new medication so my doctor can see if those help, right now I got a new one and have to take 4 pills for 10 weeks so he can see if there's any effect. But one day I really think I should try a pain management program, thank you!!
I’m so sorry to hear that. Magnesium spray (available from Amazon) and regular b12 injections can be game changers for SOME people. God bless you 🙏
Thank you for the support ❤️❤️ right now I'm just trying the medication my doctor prescribes to me so he can see if any of those help relieve the pain or find the cause of it
Has anyone suggested hyper mobile Ehlers Danlos? I have it, and was misdiagnosed with fibromyalgia, and I also have severe fatigue.
I've heard about EDS but it was never suggested! We are 90% sure the pain I feel is on the nerves because its in really specific places that my physiotherapist mom knows exactly it's right in the nerves sometimes (like the ulnar nerve is one of the most noticeable) But I'm trying to rule out everything and it could really be EDS, I'll search more about it, thank you!!
It's quite common to be diagnosed with both.
This is very interesting to me. I have fibromyalgia, but also only in my limbs and usually accompanied by fatigue. It used to be much worse, but after I got on bipolar medication it got better. Off topic, I also had cyclical vomiting syndrome, but that was cured with bipolar medication.
Your case is much more severe than mine, but it makes me wonder if you don't mind answering, do you have bipolar as well?
To be clear, im not trying to insinuate that your pain (or mine) is from a mental illness, I just notice that bipolar people tend to have similar physical illnesses as well.
That's interesting!! I don't think I'm bipolar because someone would've noticed it by now and I really don't think I am. And I totally understand you, my pain gets way worse on stressing situations or when someone is standing on my left (yeah Idk why...) and that was one of the reasons I used to think it was all on my mind!
How tall are you? And are your joints really flexible?
I've been around 1,65m for years now since I stopped growing, even when I was a child I was around that height and my classmates were like half of my height but now most of them are my height or slightly taller (still teens). About my joints, they look just fine and normal, no extra flexibility!
Have they ever tested your vitamin D levels?
That was one of the first things they did! My vitamin D levels were TERRIBLE, I started taking vitamins every day and now I have a normal and great vitamin D level, but my symptoms didn't change anything :(
Have you tried Tylenol or Advil ?
Weed ? (If legal where you are)
Do they help ?
The only medication that sometimes helps is tramadol, which I can only take it in extreme pain days, if I try to take it 2 days in a row, it doesn't make any effect!
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