Wow! After all these years, I finally found several articles in Health Rising on this issue. This describes most of my bizarre issues with fibromyalgia that makes doctors think I’m nuts. Has anyone else ever heard of orthostatic Intolerance?
They said it was Orthostatic Hypertension and the ER gave me canned gaterade and walking papers! Thank you for asking this question, it hit quite a nerve!
August 2017, I had another episode. It happens when I take Gabapentin and Norco so I try not to take those close to each other. I have had these episodes since my father left the family when I was 14. I had stress overload.
When it hits me, I usually am getting up from sitting down or lying down or if I've turned around too fast while standing. I can't see anything, saying anything, move except to sit down or lie down but I can hear everything.
My mom has started yelling at me hysterically or saying to make me mad, trying to get a response out of me but I can't do anything but sit or lie there.
The only person who told me what I had was a nurse once when I was getting my blood pressure checked. Not one doctor has helped me with it, oh wait one when I was 22. I saw him for an ulcer and my blood pressure was 80 over 60 when I stood up. I was only 125 pounds. He said to eat salt or wear compression socks.
@A MyFibroTeam Member God bless you. Gentle hugs.
Dr's thinking I am a lair and a nutter I have had myself, I know many who still have this or get this treatment Globally. I was very lucky in the fact the very first Dr I presented my pain to was a pain specialist here in Scotland. Helped me a lot, probably saved me from myself. I have a different Dr now and they are really lovely. I am always being sent Fibro articles by family and friends, but for me it's false hope as like you, like many, I would love some help now...
Keep on Keeping on..
@A MyFibroTeam Member Orthostatic intolerance
Orthostatic intolerance is the development of symptoms when standing upright which are relieved when reclining. There are many types of orthostatic intolerance. OI can be a subcategory of dysautonomia, a disorder of the autonomic nervous system occurring when an individual stands up.
Wikipedia · Text under CC-BY-SA license
I have heard of it now thanks to you! I'm going to find out what my Dr knows too, this explains so much! I have many of these symptoms daily. I always thought I might be weird for pulling my legs up when I sit... lol, you know as an adult, sometimes I feel like I'm climbing in my chair like a kid. It makes so much sense now, I could never walk and talk on the phone without getting winded. I love this group because it helps carve out short cuts along this long thorny road we travel... warm gentle hugs @A MyFibroTeam Member !
I have been seeing a doctor in Hamilton ON for this very thing for a few years. I am currently receiving IV Saline treatments, midodrine and Myrbetriq. IV treatments are 2 times a week for 1 month 1L infused over 4 hours then once a week. Once humidity hits and I sweat insanely I may return to 2xweek. My Midodrine 2.5 mg is 3 times a day regularly with a prn when I am going shopping or anything requiring standing longer periods. LIFE CHANGER FOLKS!!!! My Myrbetriq is for my overactive bladder. I can not retain my fluids long enough to absorb them...hence the hydration over 4 hours. I have had cystoscopy to confirm low threshold and small bladder.
Compression Stocking were also prescribed...the tightest you can stand and he actually wanted them to my stomach. I couldn't do it. Also, the tighter they are the more energy they require to put on. Learned that lesson, plus I couldn't handle the that much constriction. I am currently using the 2nd tightest and only knee high.
I have been ordered Florinef and tried it twice. Unfortunately it increased my fatigue and I couldn't stabilize so I gave up taking it. I will attempt using it again. It helps with maintaining Salt Levels. As we all know...the wind blows and things change within our bodies. lol so I may be able to tolerate it at a later date.
Almost forgot to mention... I was diagnosed with OI after I saw a Cardiologist at an Arrhythmia Clinic in Hamilton for the palpations I felt. (beta blocker helps with that) He sent me to his colleague who also specializes POTS and OI. After completion of a Tilt Table test I was given the diagnoses.
My body is basically stuck in Fight or Flight Mode as are many of us.
Daily, Increase Salt Intake and Drink 2.5-3L a day.
I hope this helps :)