My Problem List:
- chronic abdominal pain
- chronic nausea
- alternating between diarrhea/constipation
- mucus & blood in stool
- undigested food in stool
- loss of appetite
- early satiety
- syncope/pre-syncope
- fluctuations in weight
- rectal bleeding
- dysphagia
- various skin rashes
- photosensitivity
- dizziness
- changes in blood pressure
- flushing
- hot/cold flashes
- insomnia
- allergies/asthma
- tachycardia
- olfactory hallucinations
- skin rashes
- hair loss
- urticaria
- ADHD
- word loss
- incoordination/balance issues
- dizziness
- cognitive dysfunctions
- general fatigue/malaise
- heart palpitations
- olfactory hallucinations
- arthralgia
- stiffness in joints
- muscle twitching
- eye twitching
- numbness in hands & feet
- chest tightness/pressure
- shortness of breath
- swollen lymph nodes/glands
- itchy skin, tunnel vision
- red/dry/itchy eyes
- growth in both height & feet
- sleep apnea
- abnormal menstrual cycle
- arthritis
- chronic fatigue syndrome
- irregular heart rhythm
- IBS
- jaundice
- occipital neuralgia
- palpitations
- recurrent infections
- autoimmune symptoms
- alternating sleep patterns
- burning sensation UNDER skin but ABOVE the muscle
- olfactory hallucinations
- migraines
- idiopathic anaphylaxis
- Orthostatic hypotension/hyertension
Undiagnosed Warrior 
Oh my…
LikeLiked by 1 person
I have a lot of similar symptoms and I’ve been diagnosed with fibromyalgia and irritable bowel syndrome. It might not answer all your questions but all my tests never show anything and fibro can cause so many different things its ridiculous! Just a thought. =)
LikeLiked by 1 person
I’ve often thought of fibro, but it’s so hard to get an actual diagnosis. The only thing that points away from fibro and like conditions is the attack on my heart with no heart disease. The tachycardia is explained by the POTS, but the others lean toward infiltrative or autoimmune conditions.
IBS, on the other hand, I got diagnosed with before they ever tested anything else.
LikeLiked by 1 person
Yeah, fibro is so hard because a lot of people don’t believe in it but its the only thing that explains so much without anything else showing up. I can understand your frustration though! I hope it all gets figured out at some point soon. ❤
LikeLiked by 1 person
Thank you. Unfortunately, there’s so much out there that medicine does not know our hasn’t discovered yet. And it doesn’t help that some doctors aren’t willing to learn about new research or don’t want to believe that symptoms of certain ailments are real. I’m glad you got a diagnosis, though. And thanks for reaching out.
LikeLiked by 1 person
Dysautonomia (POTS is just one of the types) causes a dysfunction of the autonomic nervous system so it can cause heart arrhythmia not actually caused by heart disease and basically affect any organ in the body controlled by the ANS including heart rate, blood pressure, body temperature, bowels, bladder etc. Did you ever get an autoimmune diagnosis which explained your symptoms?
LikeLiked by 1 person
I actually did get a diagnosis of an autoimmune form of dysautonomia (Anti-Glutamic Acid Decarboxylase Antibody Syndrome/GAD65) and POTS, as well as a few other comorbidities. Great guess 💙
LikeLike
Interesting to know. I have over 20 symptoms now too but have a diagnosis of Dysautonomia which explains some of my symptoms but I guess with one diagnosis comes a myriad of symptoms and other co-mobidites as often diagnoses are symptoms of another underlying condition.
LikeLike
How long have you been fighting? Are you still fighting? If you aren’t seeing a rheumatologist and neurologist, I would recommend it. Honestly, you and I have a lot of the same symptoms. Push to rule out Lupus and Multiple Sclerosis. Then see a gastroenterologist for possible diverticular problems.
I’m not a doctor, just someone who’s been run through the medical mill symptom-wise. It’s a tough ride.
Good luck! ❤
LikeLiked by 1 person
I am currently under the care of a immunologist/rheumatologist and a new neurologist, as well as a gastroenterologist, GI surgeon, vascular surgeon, gynecologist, urologist, cardiologist, dermatologist, pulmonary specualist, and primary care. They currently have diagnosed a number of rare and not so rare disorders but there is still an underlying condition attacking my body which they have not been able to diagnose as of yet. Originally they said I have Lupus but then blood tests did not show any autoimmune markers, except my viper venom screen which only shows “weird” clotting time. Some doctors still think I have Lupus, others do not. I’m starting to think it’s either infiltrative or lymphatic. Just had my first brain mri this week, waiting on results.
LikeLike
I would definitely keep pushing Lupus, blood tests can come back negative sometimes. Good luck on your MRI results. Sounds like you have a good team, as long as they are taking tests to figure it out.
If anyone mentions that it’s in your head, dump them fast and find a new doctor.
Good luck next week! 🙂
LikeLiked by 1 person
Oh yes. It took me a long time to realize when to let go of doctors. I’m an old pro now haha.
LikeLiked by 1 person
Me too. It’s crazy that we need to be.
LikeLiked by 1 person
It really is. People don’t believe it unless the’ve been through it themselves.
LikeLike
Wow, some of those symptoms must be crazy to deal with! I have a lot of similar symptoms, but my biggest one is sensitivity. Little things really hurt me. Doctors don’t seem to understand what i mean by that, my first doctor was just a pill pusher.
When I say I’m sensitive, I mean I’d really prefer it if you don’t stab me with a needle more than necessary or put me through painful tests, you know?
I’ve had it pretty rough because even my family doesn’t believe me sometimes. I get things like, “you always hurt” “I barely even touched you” “you need to exercise more” and it drives me crazy. I’ve exercised plenty and it hurts DURING the exercise, like real pain, not it just soreness.
I only recently had some of the digestive symptoms, a friend of yours suggested this blog to me on med help. I always have a hard time accepting that my digestive system is to blame because the pain is not a burning sensation and it runs from my mouth down to my stomach. I often have chest pain and my throat is always tight and painful and it feels like something is squeezing my throat.
Sorry for the long, seemingly unrelated rant, I’m just trying to find my diagnosis as well and fibromyalgia has also been on the table, but I don’t trust my original, pill pusher doctor.
I want to ask you what type of pain you feel in your esophagus, throat, and stomach area. I know explaining pain is pretty hard, but if you can, it may help me a lot! I’m sorry you have to deal with all this and I know how much it sucks that medical diagnoses are so hard when the symptoms are so uncommon. I hope we can both find an answer!
LikeLiked by 1 person
No need to apologize at all. Sounds like you have a series of symptoms going on yourself. The sensitivity you mentioned seems completely normal to me because you go through so much with medical testing. I’ve heard of people developing either a high pain tolerance or a low pain tolerance – and even phobias of testing/doctors. As they say, chronic illness is not for the weak of heart. I’m very sorry that you’re having trouble with friends and family believing you. It’s hard to explain something that doesn’t have a name and it’s harder to convince others that you’re really sick. However, the biggest lesson I’ve learned is to let others think how they want and do what YOU feel is right. You know your body better than anyone else and if you feel like something is wrong, there probably is. Keep searching until you find a doctor who is willing to jump on board.
As far as my own GI pain, the worst usually follows after eating. It’s not really an acid like pain, but more of a strong cramping mixed with sharp nonstop sensations. I literally feel my food get stuck in the upper middle-left area and that pain last until the food moves itself (such can sometimes take days). I also get extremely sharp pains on my left side and within my pelvis at times. The rest of the time, it’s constant nausea (whether I’ve eaten or not) and a dull, nagging pain through my left side, although it does migrate from time to time. I have problems with swallowing food and liquids a it wants to come up often, and I also can’t eat and drink a lot at a time since I physically can’t get it down. They stretched my esophagus last year which helped for a while but is now back to being difficult again. Alternating between constipation and diarrhea offers their own kind of pain, but nothing out of the ordinary one would expect with either. The difficulty comes when I can only pass blood and mucous when everything I’ve eaten is stuck, but we have yet to see any obstructions. Hopefully this explanation helps, but it truly is hard to describe these types of feelings. I really hope you find answers soon so you can validate your experiences.
LikeLiked by 1 person
Thank you so much! That actually did help a lot and will be instrumental when talking with my new doctor. Hopefully I can find a way to help others as well with similar problems. It’s rough having a physical, but invisible problem while also having a mental issue, thoughts range from, “this is the worst, I’m probably dying” to “it’s probably not even that bad, I bet it’s not even worth it to get a diagnosis.” While I know both are untrue, the anxiety and depression go up and down and convince the brain of many irrational things.
Thanks again!
LikeLiked by 1 person
It really is tough. Keep sharing your story and keep looking. I can’t tell you how many people have reached out to me because they have similar things going on. The support groups on Facebook are really helpful too.
LikeLike
Hey, do you still post here? I can see this blog was a while ago. Have you seen a Lyme Literate Doctor (LLMD)? I suffer majority of those symptoms and am being investigated for tick borne illnesses and coinfections. Rashes similar to the one you posted as ‘after sun exposure’ pop up all the time in Lyme/co-infection groups. It’s not everyone’s answer, but for some people the co-infection testing is very useful for long-standing unexplained/underlying issues.
https://polldaddy.com/js/rating/rating.js
LikeLiked by 1 person
Hi there. I haven’t posted in a while – I’ve been working on an update post for a while now since I have actually found my diagnosis but I’ve been overwhelmed with treatment and my health getting declining that it’s been difficult to finish. I’m hoping to post a formal update soon. Thanks for checking in.
LikeLike