Fibromyalgia is Much More than "My Whole Body Hurts"

in #health3 years ago (edited)

Fibromyalgia is Much More than "My Whole Body Hurts"
By @Jealousyjane

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Most people, if they have heard of fibromyalgia, think it's just a blanket word that means " I hurt all over".
I wanted to fight the stigmas today and talk about the symptoms I am suffering from that are not pain. I was prompted to write about the non-pain related symptoms because my disability appeal lawyer said some really ignorant things and my fingertips have been pins and needles for 3 days straight now and I cleaned my house yesterday so today I can barely leave my bed because I have crashed with serious fatigue and muscle weakness.

When I received my diagnosis, I had to make an appointment and wait over 6 months. I was warned by the receptionist that the rheumatologist didn't believe in fibromyalgia as a real diagnosis and that if she ruled out everything else and gave me the fibromyalgia diagnosis, she would refuse to treat it and kick me back to my primary care physician. I cried and cried and cried when I hung up the phone that day.

Women in my age group (30's) who have been diagnosed with PTSD or CPTSD have a very high likelihood of also having the diagnosis of fibromyalgia. NONE of my many doctors talked to me about fibromyalgia until I brought them the diagnosis and told them I had it. The same thing happened with the PTSD. I was seeking emergency care telling them I think I have PTSD.

Today, I am still working to find a rheumatologist to treat my fibromyalgia. Currently, my primary care physician tells me to "exercise more" and that is the main thing. My spinal/pain management doctor gives me Lyrica and Gabapentin and Tramadol for my fibromyalgia, neuropathy, and spinal nerve damage. There is no current cure for fibromyalgia.

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I am more than " My body hurts all over."

I want to just make a list of symptoms that are not pain that I struggle with:

sensitivity to hot and cold and rain and snow and sunshine.
increased allergies
shaking when hungry
cold hands
cold feet
feeling cold often
chills
extreme fatigue
low blood pressure
low body temp
night sweats
susceptible to heat stroke
increased thirst
tachychardia
SVT
heart palpatations
heart pounds so hard it shakes body
alcohol intolerance
brain fog
feeling faint
seeing sparks
headaches
eye aches
joint swelling
light headed
muscle twitching
noise intolerance
weak limbs
numb tingling sensations
burning sensations
photosensitivity
ears ringing
touch of clothing causes discomfort or pain
trembling
feeling lost in normal settings
simple math difficulty
difficulty following complicated directions or instructions
lack of concentration
guilt
too disoriented to drive
forgetting what i am doing or why I am in a room
image movement (oscillopsia)
pressure behind eyes
dry eyesjaw clenching/teeth grinding
tearing eyes
slow focus accomodation
seeing sparks
swelling around eyes
dry eyes nose and mouth
peridontal disease
sore tenderness ontop of head
migrating joint pulses or spasms
morning stiffness
reduced range of motion
stiff neck
using wrong words
bloating
increased stomach acid
irritible bowel
heartburn
nausea
vomiting
stomach aches
bite tongue or cheek frequently
bump into things
feel confused
vertigo
dizzy
balance decreased especially when eyes are closed
blurry vision
double vision
rashes
vertical nail ridges
altered sleep patterns
insomnia
difficulty falling asleep
difficulty staying asleep
restless leg
night terrors
non-restorative sleep
endometriosis
frequent urination
worsening of pms
infertility
hydrosis
hypoglycemia
delayed reaction to exertion
electromagnetic sensitivity
fatigue worsened by stress
hands hurt in cold water
hoarseness
mood swings
anxiety
low self esteem
depression
feeling worthless
guilt
hopeless
irritibility
panic attacks
personality changes
rage attacks
suicidal thoughts
food sensitivity
medication sensitivity
chemical sensitivity
light sensitivity
noise sensivity
abnormal scarring
bruise easily
bruises take longer to fade
dermographia
easily scar
fragile nails
frequent skin rash or irritation
overgrown connective tissue

sounds really fun, doesn't it? Sounds much more complicated that just " I hurt all over", doesn't it?

I hope sharing this will help fight the stigmas.
These symptoms came off a really helpful list I found here:
http://www.fibronetwork.org.au/images/downloads/The%20ridiculously%20long%20list%20of%20Fibro%20symptoms.pdf
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I’m sorry you are going through all of this..hope you find a way to feel better..:(

thank you my meds do help somewhat and I'm looking forward to warmer weather with more sunshine.

Fibromyalgia can often be a catch all diagnosis when medical doctors don't know whats going on. You will not have lasting success if you are just trying to suppress symptoms.

Fibromylagia often is a condition of excess internal toxicity which causes decreased energy production in the muscle cells. So looking at supporting mitochondrial function is a must.

You would be better served to try to find a licensed Naturopathic Doctor to help you detox before building up your energy reserves then trying to go on a suppressive medication.

I'm sorry you are going through that. As one that deals with chronic pain, I would prefer having to deal with more pain than a unpredictable symptoms such as those you provided. I know you gotta have one hell of a resilient character to deal with that. Stay awesome. :)

That is a ridiculously large list of symptoms.
I don't know anyone with Fibromyalgia, so I can't really relate,
but I do hope you feel better in the future.

Wow @jealousyjane it sounds like your whole system is on fire! All those symptoms are from a body that is heavily inflamed.
I've had CFS for 10 years and mine is caused by Tick Bite Fever, Malaria, Bilharzia, Endometriosis, H-pylori and Chlamidya Pneumonia ( Chronic lung infection, not STD).
I don't have the severe nerve pain symptoms that you have but I can relate to most of it. Brain fog, joint pain, depression, night sweats, nightmares etc.

It's so frustrating when the doctors don't believe it! The most valuable thing is finding a doctor who believes you. 'Don't believe in Fibro' bah! its not the tooth fairy!

I'm currently on an antibiotic treatment cycle under a colleague of Dr Jadin http://cecilejadin.info/about-dr-cecile-jadin.html. to address the infections again.
Something that I have found to help with the joint and muscle pain to help remove the toxic buildup is either Activated Charcoal ( easier on the digestive system and easy to get hold of in capsule from) or Zeolite - a volcanic ash mineral supplement which is a universally used chelating agent. It pulls toxins and heavy metals out of your colon. I can feel a difference within 20 minutes of taking it. It's almost like I can hear the Windows startup sound🙂. It's just a supportive supplement.
Recently I've been getting nerve pain in my left hand. Exactly that pain that you're talking about where putting your hand in water feels like boiling oil. In the past the pain was in my right arm just at the elbow. I 've found it usually is linked to my liver being unhappy and has to do with a mineral difficiency. Taking a spoonfull of blackstrap molasses makes the fastest difference in my experience. I've tried painkillers and they do absolutely nothing, but the molasses helps. With the recent pain in my left hand and arm I took both molasses and Zeolite again ( I hadn't taken any in a long time) and by the next morning the pain was almost gone. There is a lot more going on than just a mineral difficiency but I have found little things that help while I wait for my body to heal.

We're each different and I know you're getting so many suggestions of things that 'help'. If it can help you I really recommend trying Zeolite and Molases.( the nastier the better) . It doesn't cure what's wrong, it just makes it a bit more bearable.

Have a look at the website that I linked you and see if anything she says resonates with you or makes sense.

Much love my fellow spoonie!
Lizelle

I suffer from an auto-immune disease and it is very difficult to describe and explain what happens during an episode . Illnesses and disabilities are NOT always visual.

you might want to check out https://inclinedbedtherapy.com/testimonials/fibromyalgia

There might also be a connection to lyme disease ("lyme disease, anatomy of a cover-up"), heavy metal poisoning (usually from amalgame fillings), focal infections (root-filled teeth), natural radiation fields at the sleeping place (water veins), atlas misalignment (see http://www.atlantotec.com) and sometimes parasites or microbial infestation.

I could give more tips