What is fibromyalgia? Do you have unexplained pain and chronic fatigue?
What is fibromyalgia? Do you have unexplained pain and chronic fatigue?What is fibromyalgia? Do you have unexplained pain and chronic fatigue?What is fibromyalgia? Do you have unexplained pain and chronic fatigue?Are doctors at a loss? Pain meds don't work? You have chronic fatigue, weird rash, chest pain, irritable bowels, stomach...
Info, links and my story provided to help you learn about misunderstood issues, fibro, and othe
I'M AN ENIGMA - click all pictures
I grew up having random aches and pains throughout my entire body since the age of 5. I thought this was normal so I didn't tell anyone, nor did I complain until physical therapy was needed many years later. Silly me! Not only did I have random pains, but I was also blacking out losing consciousness upon standing. No one ever witnessed that. Again, I thought it was normal. Sadly, in 2007 when I was having severe arrythymias that kept me out of work for 3 months, my son, then 11, witnessed it and wasn't concerned. Why? Because he had been doing it since he was little. I had no idea either! He told me it had been happening to him for as long as he could remember. Over the years I explained it to myself as the body is complicated and complex. I had been in and out of physical therapy between 1994-2000 (age 19-25) for knees, shoulders, back, hips, wrists, etc. Every therapist said, "You are so hypermobile", but never said it was a problem. EDS wasn't really known then
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CYP450
Bad combination to have intense pain and unable to take pain meds.
Sadly, I passed this on to both of my boys.
CYP450 is a pathway of enzymes in the liver that metabolizes (process) medications.
If you have ever experienced any medication that doesn't work as expected, maybe you too, have an enzyme deficiency.
What happens? Meds may not work at all, not as they should, or too quickly which can become toxic.
It's unfortunate many doctors, including surgeons, are not familiar with cyp issues. The same goes for pain management doctors.
Do you feel like you are treated as a drug seeker because pain meds are not working? Discuss having this simple blood test done with your doctor.
I personally have never seen a pain management physician, nor have I ever been treated like a drug seeker, but I do have friends that have.
*These comments are not to undermine or belittle physicians, I am only sharing an opinion from personal knowledge and experience, and from working in the medical field for 20 years with numerous providers.
Clink on picture.
EHLERS DANLOS SYNDROME. 4 things you may have that you thought were normal too? 4 things you never mentioned to your doctor?
Can EDS be the cause of your pain and problems? If providers asked 4 questions during an office visit we may be diagnosed sooner. It can take 20-30 years to get diagnosed because the symptoms are so varied and seem unrelated, plus it isn't widely known or understood. A rheumatologist may be able to help too. You may be referred for genetic testing. Diagnosing EDS, depending on the type, is done by medical history & signs/symptoms. *Negative Genetic testing does not rule out some forms of EDS. The 4 questions in my opinion are: 1) *BEIGHTON'S SCALE -determines joint hypermobility meaning extra movement in joints, but not necessarily all of them. 2) *LOOSE/STRETCHY SKIN -collagen deficiency, Collagen is the 'glue that holds us together'. The entire body is made of collagen. 3) *RANDOM PAIN 4) *DIZZY or BLACK OUT UPON STANDING -dysautonomia or POTS "Postural Orthostatic Tachycardia Syndrome" meaning rapid heart beat upon standing and remaining elevated while standing or Orthostatic hypotension which means your heart rate goes up and your blood pressure drops upon standing.
You, or your doctor, can do a "poor man's tilt table test" at home or in your doctor's office to see if you may need additional testing for POTS. Standing for a minimum of 10 min to 30 is best. See a physician if you have concerns or questionable results if you do this yourself at home.
http://www.oiresource.com/oitest.htm
**Poor man's tilt table test does not mean you have POTS or EDS.
*These do not necessarily mean you have EDS.
Click on pictures and links to be directed to other sites: https://ehlers-danlos.com/what-is-eds/
POTS
Poor man's tilt table test
clickable pictures
See why I'm always tired?
I can't stop yawning!
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It's exhausting!
Legs and back will sometimes cramp up just from standing more than a few minutes.
THEY DON'T KNOW THESE EITHER!
MCAD-Often found in people that have EDS & POTS
MCAD-Often found in people that have EDS & POTS
MCAD-Often found in people that have EDS & POTS
MAST CELL ACTIVATION DISORDER
Primary symptoms include cardiovascular, dermatological, gastrointestinal, neurological and respiratory problems.
A couple of years ago my intestines became distended and the pain doubled me over for 2 months! It wasn't celiac or crohns!
Cromlyn sodium help with that, thankfully. (The worse part of GI issues is anismus, but it isn't from MCAD) https://en.wikipedia.org/wiki/Anismus
Diet and gluten do not play a role in my GI issues. Vitamin deficiency may be due to intestinal absorption issues because supplements certainly do not improve my deficiencies.
Getting wet is a problem. Any water, including rain, will cause my entire body to itch for about an hour really bad! I already itch all the time, but getting wet takes it to a whole other level!
I also get red patches, usually quite large, randomly! They also itch and are warm to the touch, even through clothing. MCAD isnt a 'true' allergy. One good thing about all my issues is that I don't have any 'true' allergies. :) GO ME!
Maybe you have something similar?
Spontaneous Cerebrospinal Fluid Leak
MCAD-Often found in people that have EDS & POTS
MCAD-Often found in people that have EDS & POTS
I have leaked clear fluid from my nose and ear a few times since childhood, but more often since 2009. Each time it happens now I end up having to lay in bed for a few days. It causes extreme headache and pressure issues when I'm upright. I can ONLY lay down!
Most minor spinal fluids leaks are undetectable and are usually diagnosed based on history and symptoms. 2013 I leaked and by the time I was able to see the specialist and get scans done it was too late. When I leak I get a weird metal taste in mouth! Tell tale sign! (csf poured out of my nose onto a patient while at work. I missed a little over a month of work that time) That ENT specialist was not familiar with spontaneous leaks either, but after reading up on it he agreed. One time I argued with 2 ER doctors I used to work with. The one claimed it is physically impossible unless there is a defect or severe head trauma. He refused to read the studies I brought with me! I no longer go to ER because they can't and have never helped me! I went for migraines! They wanted to follow their 'protocol' for migraines! HELLO! The protocol doesn't work for people that can't metabolize those medications so please try something else! NOPE, they don't because they also DO NOT understand CYP450. FRUSTRATING!
The scan that was done that was 'too late' did provide info that I fall into another 5% of the population category! I don't have frontal sinuses in my forehead. lol
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more fun stuff
right and left........jaw joints
Both are abnormally shaped. The left pushes up against the artery at times and when that happens my ear canal is on fire! It can also cause ringing in the ears (TINNITUS).
In Nov 2019 I had another scan done of my jaw. Apparently, the 'sac' that is on top of the 'hinge' is gone on the left and wearing away on the right. Over several years the sac on the left had been wearing away, which I just found out, and during that time I had INTENSE pain that would stop me in my tracks! Keep in mind, I do have a high pain tolerance, but geez, that HURT!! My jaw used to lock too, but now that the sac is gone it can't lock anymore. Since the right started wearing away I've been having the same pain on that side now. UGH, not fun! When I had the last scan done in Nov 2019 I learned that when the sac wears away it is one of the most painful problems.
Your temporomandibular joint is a hinge that connects your jaw to the temporal bones of your skull, which are in front of each ear. It lets you move your jaw up and down and side to side, so you can talk, chew, and yawn. Problems with your jaw and the muscles in your face that control it are known as temporomandibular disorders (TMD). But you may hear it wrongly called TMJ, after the joint.
I saw a TMJ specialist in 2014.....he'd never seen jaw joints like mine before, and it may be from EDS? The pain in the jaw joint is way worse than someone pushing on the pressure point under ear...... I can handle that! This is worse than that!
Like I said, my jaw doesn't lock anymore since the joint is deformed and the sac is gone, The deformity can ONLY be seen on an X-RAY so you cannot tell by looking at me. It can hurt when eating and there are many times that my mouth opens or closes wrong....OUCH again!
Meniere's Disease?
Ménière's disease is an inner-ear condition that can cause vertigo, a specific type of dizziness in which you feel as though you're spinning. It also can cause ringing in your ear (tinnitus), hearing loss that comes and goes, and a feeling of fullness or pressure in your ear. Usually, only one ear is affected, but it can eventually affect both. It can go into 'remission' too.
My left ear has been ringing nonstop 24/7 since the beginning of 2017, before that it was intermittent for several years. By November 2017 I was going "mental" and couldn't take it anymore! I was also falling over, falling to the left mostly, and smashed my face into my headboard trying to make my bed several times (I stopped making my bed.) I don't know how many times I about smashed my face on things going down. OUCH! The ringing was so loud! As of today, 2/6/2020, it's a little quieter, but still annoying! I have not been officially diagnosed by my doctor because she believes I should be dizzy all the time, so dizzy I wouldn't be able to stand up. (I LOVE LOVE LOVE MY DOCTOR AND AM NOT SAYING ANYTHING BAD ABOUTHER!)
A different doctor, off record, a friend of mine believes I have it and said I am fortunately in remission because my low tone hearing came back! I was on the line of being low tone deaf! "Old age hearing loss" loses high pitch hearing first. Low tone deafness with tinnitus and dizziness is Menieres. My right ear rings even louder, so loud that I swear you could hear it if you were standing next to me!
TRIGEMINAL NEURALGIA
My doctor mentioned this today (August 2017) and diagnosed this. It was mentioned many, many years ago, but never officially diagnosed. This is usually on the entire right side of my face all the way to center of face between eyes and around eyes, Sometimes of left. Some people compare this pain to root canals. I can compare because stupid me wanted old silver taken out and replaced with the white stuff and ended up needing root canals because he hit the nerves. I wouldn't recommend doing that unless absolutely necessary because you, too, may end up needing root canals and crowns when they go to far. Anyway, root canals didn't hurt me, but this trigminal neuralgia can be off the charts!
Same, but different.....zebras
Medical students have been taught for decades that.......
“When you hear hoofbeats behind you, don’t expect to see a zebra.”
In other words, look for the more common and usual, not the surprising diagnosis.
Chronic Fatigue Syndrome -click all pic
Always tired? Resting doesn't alleviate the tired feeling or pain. Difficulty concentrating or remembering things. I swear I've become "dumber"! I'm sick of feeling sick. Several issues can cause CFS, but mine is most likely from EDS.
SPOON THEORY
This is the best way to describe a day in my shoes. A close friend of mine knew what I went through on a daily basis, but didn't really understand until he read The Spoon Theory.
Click on pictures to be directed to informational sites. Wikipedia seems to have the most information and is useful.