To all you CFS/ME sufferers with some form of Dysautonomia

[Tired of being sick]

Have you had recent Xrays/MRI's in the last last 5 years of body parts that are causing chronic pain?

The reason I ask is because every time I get an Xray or MRI done there is
arthritis or torn ligaments or bone loss or Ischemic change found.

I am convinced that hypovolemia(low blood volume) or over sized veins is the very cause of all the above.

So in my case if I soon do not find an effective way to get adequate blood supply throughout
my body and brain I'm going to continue to slowly but surely rot away.

I have the Hyperadrenergic with late stage of Neuromediated form of POTS..
I was diagnosed by 2 of the best cardiac electrophysiologists in the US.


Now the best way to get blood going quickly as of now to where it is supposed to go
is Adderall 1st and foremost especially if you're lacking appropriate flow to the brain
in my case.

Adderall tightens your veins instantly therefore making the blood you do have
close to as useful as one with healthy normal blood volume..

How do I know this?

Easy
I'm on the strongest pain meds in the world and they do not relieve my
"widespread"pain near what Adderall does..

If Adderall is not an option..

Midodrine is the only med somewhat similar to Adderall
except Midodrine does not cross the blood-brain barrier

I however need Adderall since my brain MRI shows probable chronic ischemic change
and the fact that I have ADD..

Those of you who have Dysautonomia with a lot of pain to go with it should
get xrays/mri's of every body part that bothers you including the brain
if you have significant cognitive issues..

This is my own but strong opinion of course..

 

[taniaaust1]

arthritis or torn ligaments or bone loss or Ischemic change found.

A lot of people with ME/CFS have connective tissue issues.. that can lead to torn ligaments.

I tore the ligaments in one shoulder playing around, swim racing butterfly when a teen (that was throu a excessive activity, that was such a pity too. I was winning against an older boy who'd qualifed for state level competition. I'd never swam so hard or fast before and then my shoulder popped out of joint and things tore).

I also tore the tendons in the OTHER shoulder but that was was more strange. With that one, all I'd done is gently reached out to turn off a power point (I had ME at the time of my second torn shoulder) and then couldnt use my arm properly. An orthopedic?? specialist I then saw said it was highly unusual to to tear tendon like this and re my age too at the time .. he said it was very unusual unless one has an autoimmune disease. (Due to these issues and a bowel prolapse Ive had due to IBS-C.. one of my CFS specialists has written connective tissue disorder on my medical record).

There is also a subgroup of ME people who get bone loss, this subgroup was connected with a few other issues too (sorry I cant remember details now) but I think it was also the subgroup of ME which often ends up with thyriod cancer... 1:18 something like that.. it was extremely high risk. (I paid attention to that at the time as I fit some of stuff of that ME subgroup and hence wonder about the thyriod cancer and me).

Scans showed I had ortheoarthritis in 3 different places before I was 30. I think I have it in a couple of other places too which havent been scanned. I got told it was not common to have this before 30 years. ME caused??? or dysautomonia caused.. Ive not a clue.

 

[taniaaust1]

oh I dont know if anyone else has noticed this but this is something Ive only noticed recently.. well my elderly friend did before I did and he pointed it out to me and he thought it was strange. My skin is completely changing on some days. My skin used to always be soft.. now days Im having days where its very structurally different (very course) but at other times its soft.

Anyway, something is causing all my skin to change. (the day it was at its worst.. harder.. it also wasnt as smooth and had little bumps in places but I dont know if that was related to the other skin change Im having). I dont know if this is a hydration thing or something else going on as I havent noticed this bad when Ive been very dehydrated.

 

[minkeygirl]

I have lots of orthopedic issues even though I'm not mobile. A PT told me a few years ago that the lack of motion can cause all sorts of joint issue. Rotator cuff is my current problem.

 

[August59]

I also had severe pain due to spine, shoulder, AC joints, hips, knees and even toes from 2005 (onset) through to present. It has varied in intensity and was at its worse around 2010/2012 as I was on 100mcg fentanyl patch with 60mg of oxycodone daily at my highest dosage. I'm still in severe pain, but I slowly weaned myself completely off of all opiates. I'm going to have to make a decision though as to whether to stay off and be housebound or go back on a low dose to increase mobility. I was hoping that stopping the pain meds would help with symptoms and hormone stability, but that has proven to be false hopes. The reduction in mobility was far more detrimental than the pain medication.

 

[PNR2008]

@August59, I agree, without pain meds I wouldn't be able to get out of bed to even walk around the house. What's the point?

 

[August59]

@August59, I agree, without pain meds I wouldn't be able to get out of bed to even walk around the house. What's the point?

True!!! The decrease in mobilty has had a terrible cascading effect. I geuss it all starts with the direct lowering of our metabolic rate. Pain is still there, gut motility (which I thought would get better without meds), muscular atrophy, negative changes in skin appearance/texture, direct effect on reducing severity of fatty liver and lung x-ray indicates atelectasis in the lower portions of lungs!

Can't win for loosing!