Health update
A few things to document on my health currently:
My most difficult symptom I have has been my migraines. I am currently taking Endep which is an antidepressant and also supposed to help with the headaches. I have had multiple CT scans and an MRI, however, nothing showed up. The neurologist I saw basically blamed it all on me and said it was all psychological! This may be the case, but the pain is still there!!
Recently, I have also noticed that my left nostril has been extremely blocked which has caused extra issues with sleeping! Fun! I got an x-ray done on my sinuses, and found out I have a deviated septum. This is something only surgery can fix. So I have been put on the waiting list for the operation in my area (as I do not have private health insurance) :/
Another weird symptom that has been affecting me lately seems to be something with my dreams that appear to be very realistic. I am always still in my bed, in my room as per usual, and then there are other people in my room. The only way to escape from them is to wake myself up, then fall back to sleep and they appear again. ? I'm not sure if maybe I’m getting some type of sleep paralysis as I have heard of some people seeing other aliens or creatures in their room but can't wake up? Either way, it's definitely messing with my sleep patterns, which is not helpful!
On the plus side of things, I have found a really great exercise physiologist who has helped me in designing a few exercise plans throughout the week. I have been able to go for a walk pretty much every day slowly increasing the difficulty. This has definitely helped my energy levels in the long run and has always been best first thing when I wake up in the morning.
Replies
Hello, dear. Oh my gosh!!!!! That neurologist needs to give up his practice and become an alpaca herder! My neurologist told me the same thing recently. He said my symptoms were "more about my NERVES than my NERVOUS system." I also had an MRI, which was normal. I mean, it's not like I wanted to have it be something bad, but it was upsetting to not have proof. For some reason, doctors don't listen to what your experience is. They only want test results. I am really snarky and I told my husband, "Well, if I do die, it will be a comfort for the doctor to know that my test looked great!" I'm so sorry you went through that too. I feel that in my gut, girl.
I have had some extreme migraines in the past. ME/CFS seems to switch symptoms every decade or so. So, now I have different problems. That stinks about the deviated septum and that you don't have private insurance. AGH! I have sleep apnea. So, I know how snoring and stuff like that can mess with your sleep. Your sleep problems sound terrifying. I don't know what your religious beliefs are, but I'm a Christ-follower. So, in moments of terror (I had one the other night), I try to breathe deeply and reaffirm that I belong to God and He is with me.
My dear girl, you suffer a lot for one so young. I know that God is for you and not against you. Hold on to the little blessings.
Much love,
Heather (Triunfadora)
Sometimes, when we see a doctor and give them more than one symptom, it throws them for a loop! If you don't present with symptoms that they can write a prescription for, they will often just tell the patient it's THEIR fault. Especially when test results come back negative.
I can say nasty things about our medical behavior in this Country and how doctors are trained because I've worked my while life In that system. I've seen a Lot! It ain't purty!
I think that I might try another Neurologist. Especially with the sleep problems. A sleep study might be in order. As I said before, since you have more than one symptom, this doctor may tend to ignore the fact that you need a more detailed work up.
Praying for a solid diagnosis for you. The right doctor is going to meet all the difference.
God bless!
Years ago I talked to a doctor about headaches and had tests done, which, like yours, came up negative. It was my chiropractor/osteopath who helped sort it out with neck adjustments.
I had an operation for a deviated septum when I was about your age. The ear nose and throat specialist thought that it could have been contributing to my poor sleep and dry sore throat. I don't know that it made any difference though. Many years later I did a sleep study and that showed I have sleep apnea, so I now use a CPAP machine to help me sleep and even though I don't sleep any longer with it on, it makes a big difference to how rested I feel when I wake up.
As for the exercise physiologist, I advise caution. Some of them advocate pushing yourself to keep increasing the amount you do, but personal experience has taught me the dangers of that for CFS sufferers. I found that I'd reach a certain point and even though I still felt ok, if I did anymore, I'd crash and end up not being able to do any for a while. If they ever tell you to push through the fatigue to keep going, drop them like a hot potato, they don't really understand our condition and are only going to cause you more problems.