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Fibromyalgia: Anyone out there with the same diagnosis?
Fibromyalgia | Last Active: Aug 2, 2022 | Replies (105)Comment receiving replies
I hate to be the bad guy here but may be you didn't have it. You were misdiagnosed. I have been suffering of myalgias and arthralgias for a long time, IBS, depression, anxiety, migraines, and so on. I was finally after more than 25 years, diagnosed with it. You have no idea how many supplements, teas, and just sh1t remedies out there. Some of these will make you feel better but it won't cure you. May be you are in a remission state. If you have, it will strike again. As for me, this is the second time, I have not being able to walk. You have no idea what pain is until you are hit with an electric shock therapy in one of your legs. Your muscles twitch, shake, tremble, on their own. Then suddenly, you feel a sharp knife type of pain, burning, pins and needles. Your leg is icy cold and your other one is hot. But yet, your xray show no sign of rupture, fracture and everyone thinks you are either lying or seeking attention. Through out my life I had remission states. Well, they are getting shorter and the pain is increasing. So, please forgive me for being skeptical. The only thing keeping me alive and not walking in front of a train is my believe in God and I have two sons. I honestly wish that Fibro would make its final attack and liberate me of the sick body I have been living with. It has been long enough. This disease destroyed everything I had.
My advice for anyone in a remission state is to be careful. Fibro will take advantage of that later on. If you have physical injury, pains will come out later on in life. You won't believe the pain. During remission states, I too thought I was getting heal. I worked, I danced, I did exercise. Wrong, I was deteriorating my body faster by making it work twice as hard.
Every time I get a flare now, it lasts at least 5 months, and then the recuperation state. I am bedridden. All those years with gastrointestinal problems. I did an endoscopy and colonoscopy. They found nothing. You know why. Fibro is a neurological condition. So, doctors are not able to give you a diagnosis on time and only later when you demand it.
I don't know how many times, they poke my veins. A million times probably and found nothing. Now, I am old and decrepit. Please forgive me for been such a party pooper but why do I want a remedy now. More than half my life is gone, the things that I have lost due to this illness can not be recovered.
I am glad for you, if this is what indeed has happened. But, forgive me for taking your word like a grain of salt.
Replies to "I hate to be the bad guy here but may be you didn't have it. You..."
Hey 507,
First I want to say good morning and I hope you are feeling as well as you can.
I, too, am getting a runaround from docs when I keep going in because 1) I have Constant leg cramps and fasciculations. I say, Hey doc, every night I have cramps in: Shin, calf, arch of foot, hamstring...BOTH legs.... SIMULTANEOUSLY. My "spasms" are visible from afar. It looks like there is a sea serpent under my skin. I joke and mention the movie Aliens... Neurologist says, You have fabulous muscles. I say, What? I don't exercise. those are "shapely", they are in constant spasm. Rheumatologist says, Your blood work says you don't have autoimmune disease. I say, I KNOW. I'm the one who said I don't have any symptoms of autoimmune disorders. Why is my ANA titre 1:2560, though? Pain Mgmt Psych says, You have to will your pain away.
Meanwhile, now I have the leg cramping and spasms even during the day. And now also in my glutes. And, wait for it, In My Neck. My GP literally said these words, "Yeah, that's just your fibromyalgia." The rheumatologist told me to take Aleve and Tylenol. What? I already LIVE on Aleve and Tylenol. The neurologist gave me Gabapentin. It does nothing And gives me stomach pain.
Before my FiBrO (that's called sarcasm font) dx, I had the GI issues. Endoscopy, colonoscopy, etc. I tested positive for H Pylori. I tested positive for EBV. High ANA (at that time, in 2009, it was "only" 1:640. Now 1:2560.)
The amitriptyline they first gave me made me very dizzy and made me no longer remember dreams. (Sad, because I always had amazing vivid dreams.) Whatever the antidepressant they gave me made me want to kill myself. I've been on four different antidepressants since.
A few months later I developed a neurologic itch.* NOTHING alleviated it. I was literally scratching my skin off. They finally put me on valium all day so I could maybe relax. It lasted about 3 months. It put me in the ER twice, UC multiple times. GP, Allergist, Neurologist, Dermatologist, Psych... no one could figure it out. *I have only recently determined through my own research that it was neurologic. The Neuro doc at that time did nothing but hit my knee with the hammer, see that I had normal reflexes, and sent me on my way.
ANYHOO... all this to say, I truly understand your despair, though I still have some determination left in me.
My words to you: Please do not give up!
Look for any, however tiny, moment of relief or joy. (right now a mockingbird is going on at the top of his lungs. I used to dislike mockingbirds because they are so Loud, and Literally never shut up! haha. But now I find joy in it because they can go on for so dang long!) I wish I had magic words or a wand to make things better for you. Just know that you are Not alone in your pain, regardless of how inept doctors seems to be. Sometimes b*tching about it or crying about it or talking about it to others who know can at least "get it off your chest" for a moment.
Again, don't give up! <3
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Don't give up! This is such a weird disease, but there are plenty of things to do without a prescription. Diet (non-processed, low or no sugar, avoid potato, tomato, dairy and whole wheat); lifestyle - movement is always better than rest. It also relieves pain. Fibro has to do with referred pain to muscles from accumulated fluids leaning against nerves or when the muscles are tight. So, basic yoga, PT stretches in bed, walking or water exercise are helpful. Keeping up your strenght, hydration and eating right make a difference. I do ice/heat, lidocaine patches, CBD ointment, edema massage (you tube), epsom salt baths, magnesium, B-12 and/or antidepressant for focus and a fair number of cat/cow/child/cobra yoga, clamshell stretches, piriformis stretch and edema massage before bed; THC/CBD might help calm you down before bed. There is a study for fibromyalgia: https://www.facebook.com/412638475480143/ I have had MCTD for over 20 years, still active. For gastro issues: look up GERD triggers on webmd and follow the advice there. There is no cure, but if you stick to good practices, you can keep on going.