Is this fibro?
Posted , 8 users are following.
I have quite a long story that has lead me to this forum. I'll try and make it short and sweet.
Everything started happening after I got pregnant with my one and only child who just turned 5 years old. About 1/2 way into pregnancy I developed electric like pain in my hands and feet. I chalked it up to pregnancy being I had never been pregnant before. After she was born the electric like pains subsided. I had some muscle cramping and stiffness. So I went to the neuro per my docs request. I had ever single test under the sun including an MRI, EMG, Nerve study and many labs. All normal. In fact, my nerves performed better than the norm. Basically decided hormones or inflammation caused the issues.
I haven't been right since.
All of this created HUGE anxiety and depression for me. I was placed on Cymbalta and Ativan.
My mom (who passed) was diagnosed with fibro and recently my sister informed me of her struggles and diagnosis. This is leading me to believe that fibro may just be what my problem has been all along. And I've feared MUCH worse along the way.
Here are a list of my symptoms:
-muscle pain and aching, all over, can be off and on
-insomnia is bad
-restless legs (constant twitch/buzzing feeling)
-heel pain/foot pain off and on
-many symptoms worse before period
-headaches
-brain fog
-fatigue
-joint type pain
-random eye pain
-sensitive to bright light
-occasional zaps all over body
I'm sure there are some things I'm missing.
Here is the kicker, I was put on the Cymbalta for anxiety/depression. I see that it is used to treat fibro as well. I recently didn't get my script filled due to doctor error and I had to spread out 3 doses in a week. I didn't get 4 of my doses. This set all my pain REALLY high (especially my arms, they ache terribly and spasming bit) All I can think is it's because of missing those doses.
With all of that being said....should I see about an appointment with a rheumatologist?
My neuro thinks I'm crazy, so I can't ask him for input any longer. My general doc (NP) isn't much help.
Thanks in advance!
Andrea
1 like, 13 replies
beachgirl57 happy2be
Posted
Absolutely it could be fibromyalgia! Make sure you chose a rheumatologist that treats fibromyalgia, as there are some who still do not acknowledge that it's a real disease. Good luck!
StephaniaWi happy2be
Posted
You aren't crazy but yes, sometimes people are made to feel that way. All of your symptoms do sound like fibro, but of course could still be something else. In the states in USA I have lived, Rhuematologists diagnose the fibro but they do not treat it. Which sucks but at least what they do is rule out other causes and when they cannot find anything else, they label it fibro. I would try to get a firm diagnosis and make sure they rule out other issues that it could be. Very sorry you are dealing with this.
grumpybear StephaniaWi
Posted
happy2be StephaniaWi
Posted
Thank you for your response! I guess my neuro is just sick of me thinking he's missing something. I'm sure he thinks I'm crazy deep down. 😉 I have a friend who is getting treated by a rheumo for fibro and I'm going to try and get referred to him. I just want answers and to feel good/calm again.
kiki74 happy2be
Posted
It sounds like fibro but you need a rheumatologist to diagnose it. I too started off with the tingling and was sent for nerve tests. And as I progressed, I was sent to infectious disease and rheumatologist but took a long time to get answers. It's scary and frustrating at the same time. My doctor was out the other day and I had gotten the nurse practitioner....so didn't understand what was going on. Had to educate her on what I was taking. She litterally pulled out her phone and Googled my supplements. Even subjected me to questions to make sure I wasn't a danger to myself because we discussed my brain fog.I was so p*ssed! I went in for a follow up and to get my thyroid tested again due to weight gain. Waste of time! Like the other post said ....make sure you get someone who actually treats fibro to understand. Good luck!
happy2be kiki74
Posted
Kikirae happy2be
Posted
Your symptoms sounds like fibromyalgia definitely. A rheumatologist as said before diagnose fibro. There are certain criteria for fibromyalgia such as trigger points testing etc...My PCP state I possibly had fibro but I was referred to rheumatologist for diagnosis. I have all the symptoms you mentioned plus some. I just recently got a second opinion from major hospital that research. University of Michigan Neurology they also stated I have fibromyalgia. I'm even having walking difficulty. I hope you get a referral to see a rheumatologist because your suspicious seem right. They will also rule out other diagnosis but ordering other test your PCP has not order. Some doctors don't know what to do. I was having so many issues even my neurologist, pain doctor, and PCP didn't know what to do. It no fun when they look at you like your making up symptoms or they don't what to do. Going to the doctor can be so depressing. I am still looking for meds that help my pain. I just got started medicine that help with migraines as I was having them daily. I experience them daily. I had to suggest it and actual help. The med is amitriptyline. It used to treat migraines/ headaches, fibro and depression. I had tried Imitrex, Midrin, Topamax not happened. I also had sharp pain every time I turned my head down left or right along with my migraines horrible. On top of all the other pain you list including burning and tingling all over my body. Just getting some relief 2 weeks ago. GABAPENTIN has hope with some tingling and burning sensations. Hope you get answers and at least a diagnosis. Hugsxoxo
happy2be Kikirae
Posted
Rubyjack happy2be
Posted
Hi not a Dr but can say reading your symptoms could be reading about myself .had loads of tests for all types of arthritis,diabetes etc all clear this has gone on for years finally got sent to a rheumatologist who diagnosed fibromyalgia two years ago .no magic cure but feel calmer and more able to cope now I know what it is .a lot of Dr don't believe fibromyalgia exits sounds like you may have one change your Dr ger to see rheumatologist there is no actual test but if you have certain symptoms ou get the diagnosis
my best wishes to you xx
happy2be Rubyjack
Posted
Thank you for your response. It's so frustrating and scary! Hope you're feeling well!
matp86 happy2be
Posted
I know your story all too well. I ended up at a Rheumy and only got the diagnosis after checking off pain areas on my body and after the rheumy pressed on these points to guage pain level. These points are called the "18 points of fibromyalgia". Just google it and see. Good luck.
"These 18 points (9 pairs) tend to be painful when pressed, and may spread pain to other body parts. American College of Rheumatology guidelines suggest that people with fibromyalgia have pain in at least 11 of these tender points when a doctor applies a certain amount of pressure."
zarik0405 happy2be
Posted
I also have all the symptoms, weakness in my hands, legs and arms. I don't know if it is classified as fatigue or weakness actually. But my arms kinda have that burning sensation like I'm working out. My legs don't usually have this feeling but I do feel pain when standing up and sitting down and also have pain around my knees after standing to long. I have muscle twitches on my face (almost always nose) but most of the twitches are in my legs but these are where they occur most. I have them mostly everywhere. I also have pack pain when leaning over I don't know if this would fit into the symptoms of Fibro. I haven't went into much detail with my hand weakness but it is way worse upon waking. I'm really scared this could be something serious and have an appointment schedule with my family doctor. I'm only 18😞😞
kiki74 zarik0405
Posted