Looking for suggestions about mystery auto-immune disorder.
Posted , 6 users are following.
I'm a 23 year old female. Since around the age of 7 or 8 I have experienced an odd combination of symptoms that no doctors I have seen have been able to give me a clear answer about. As of now, I have been officially diagnosed with IBS, fibromyalgia, and a yet to be specified auto-immune disorder. None of these on their own explain the entirety of my symptoms, however.
There are many days that I will feel mostly fine, but once I'm having a "flare-up" I'm basically incapable of functioning at all. It usually begins as a dull ache throughout my whole body, centralized mostly on my upper back. As it progresses I'll start to feel short of breath, as though my chest is being squeezed and I can't get enough air. The pain intensifies, and can be described more or less as though my muscles and bones are being crushed. The pain spreads up my neck and to my head where it feels like my skull, jaw, and teeth are being crushed by immense pressure. The pain makes me unable to think clearly and often leads me to tears. My joints and spine will feel like they are grinding together as well. The symptoms also spread to my digestive tract, as I will start to feel intensely nauseous. My abdomen will begin cramping and I usually end up with diarrhea and sometimes dry heaving or vomiting. Sometimes I also get lightheaded and feel like I will pass out.
I have yet to find a consistent trigger for flare-ups, but cold weather seems to make them more frequent. As for relief, once a flare-up is happening there is no way I have found to stop it. OTC pain medications do nothing at all. Stronger pain medications tend not to do much either. I take 300mg of Gabapentin per day as well which does not stop the attacks or lessen the pain. The attack only stops after I've managed to fall asleep for a full night, though sometimes they can last days at a time.
I have dealt with this for so long and I'm reaching a breaking point. I have psychological problems as well and these increasingly severe attacks are doing numbers on my mental health.
I would LOVE for any disorders that have these symptoms that I could have my doctors look into. I'm beginning to think I may have something uncommon going on that perhaps they aren't considering. So far, every doctor I have seen about this is more or less at a loss. I don't have any vitamin deficiencies but my blood tests do suggest an auto-immune and connective tissue disorder though my doctor can't seem to pin one down.
Thank you to anyone who has any suggestions.
2 likes, 3 replies
Llamalah jovian
Edited
Have you seen a neurologist?
I query some form of migraine disorder.
I have two autoimmune diseases (Hashimoto thyroiditis and secondary sjogren), a FODMAP intolerance which was originally diagnosed as IBS, and migraine disorder.
I got the migraine disorder diagnosis, and subsequent medication after i started getting severe facial twitching and spasms. After a lot of tests for MS and eye disorders, especially given my history, and a long headache diary process that is were we landed. I didn't realise I was having daily headaches until I started the diary, just ignored them through the other pain I was having. I was having pain migraines every few months, but I was having 'silent migraines' - pain free migraines that have weird and wonderful symptoms at least 5 times a month. Medication has all but gotten rid of both types. I felt a migraine coming on about two weeks ago, but it didn't actually turn into one and before that I haven't had one in over a year. They can effect every part of your body, not just the head.
The reason I query migraine is the way you describe not being able to stop the pain once it starts until you sleep, and that they can last for a few days. Mine usually last for 3 days. I have preventer medication I take every day now, and I have a rescue med (a triptan) that I need to take within the first ten minutes of feeling symptoms coming on. If I get it in time, it doesn't stop it but it does make it so I can function through the migraine and it doesn't last as long. If I don't get it in time, I have to take anti nausea and prescription pain meds which don't stop the pain but do make it so I can sleep it off.
jake09099 jovian
Posted
I can't say what exactly it is but it sounds not too different from me. I have Hashimoto's hypothyroidism and I usually have few symptoms, or at least I did for many years. This is unless I have a flair up. The flair ups caused extreme fibromyalgia, joint pain, sensitivity to pain in general, cold intolerance, edema, brain fog, mood swings, diarrhea, general feeling like death. From the sound of it you are experiencing flair ups as well, but what form of autoimmune disease I am not sure. What I can say is that finding out what caused flair ups what extremely beneficial for me. For me is literally having an orgasm as ridiculous as it sounds, its called POIS and it took me forever to find because its listed as a rare disease. Now looking back I can't believe I never put 2 and 2 together, I just thought everyone felt horrible after and it's not something you talk about. Hopefully you are able to find what is causing your flair ups, they are probably not random even if they appear to be, or at least that is how it was for me. Hope I was able to help
Dani1988 jovian
Posted
sounds like the MS hug your describing chest feels crushed etc....