Posted 11/16/2015 9:34 PM (GMT 0)
Hello,
I am new to forums of this nature, but I thought it would be good to register and seek some guidance from others who have been diagnosed with Fibromyalgia. I was just diagnosed last Monday. Before I start asking questions, I guess it would be helpful to share some of my story and symptoms. I apologize in advance, I will try to make my story as short as possible.
Around April, I began having dizzy spells. They would be on and off for hours throughout the day. I will add that it is more of a vertigo type dizzy than a lightheaded feeling. This gradually continued to progress to the point where I also began having balance issues. I have actually fallen twice over the past 4 months or so. Near the end of May, I began experiencing numbness and tingling in my lower extremities. The first week of June my entire right leg from the hip down went numb. It wasn't just as if my leg had fallen asleep, I literally could not move my leg at all. This lasted for over an hour. I had my brother drive me to the ER where I was told it was most likely peripheral neuropathy. I ended up having some similar things happen about once a month up until September. Ultrasounds were done of my legs each time and I was told it was not a clot and to go home. Over the course of June I began developing pain that varied from a burning itch to stabbing pain to very strong electric shock type pains. These primarily occurred in my lower extremities, but also would happen in my arms. In July, I had an episode where I got extremely dizzy and my heart raced. My left arm turned purple and the right side of my face went numb. I had my dad drive me to the ER where I waited 5 hours and was still not taken back. My symptoms subsided so I went home without receiving an examination. At the end of July, I saw a neurologist who had some tests run on me to test for autonomic neuropathy. I had a tilt table test which showed my heart rate increased 42 bpm from laying to standing and was diagnosed with POTS (postural orthostatic tachycardia syndrome). I had a sweat test done which showed nerve damage in my arms, hands, legs, and feet consistent with the distal (i think) neuropathy found in diabetics. However, that was dismissed due to normal findings in a skin biopsy done to part of my left leg. I should also add I did have an MRI done in September and have had my inner ears checked as well in attempt to find the cause of my dizziness and both were normal. I have seen multiple different doctors who mostly have had the response of "you're too young, there is nothing wrong with you. It's probably anxiety. Go home." A local rheumatologist who wasn't supposed to be able to see me until February ended up having a cancelation and I got to go see her last Monday. She actually believes that my symptoms are indeed real and consistent with that of an autoimmune disease. Upon physical examination, she told me I definitely have Fibromyalgia. She ordered lots of blood work and x rays of my hands and feet. If all the tests were done that needed to be, it would have taken 18 vials of blood. I am a relatively small girl and have blood sugar problems, so I believe only 12 ended up being taken. I honestly don't know exactly what all is being tested for or exactly how long some of those take to come back. I have not received the results yet, but I am set to go back to see her two weeks from today.
That is a summarized version of my story. An additional (at least from what I can remember) list of symptoms are:
Fatigue to the point I can't even vacuum a room or climb a set of stairs without needing to lay down
Tachycardia particularly when climbing stairs (even slowly), showering, or transitioning from laying to sitting and sitting to standing. Also very low heartbeat if I go more than two or three hours between meals. Chest pain usually accompanies each of these scenarios.
Short term memory loss and a general feeling of not being "with it". I feel almost as if I am constantly in a dream.
Excessive sleepiness that comes on suddenly
All over stiffness during the night and upon waking. Also after sitting in a car for more than 10 minutes.
Raynauds syndrome
Pain that occurs in both knees, ankles, feet, hands, wrists, shoulders, and hips
Spasms that are short lived but severe in intensity. They occur in my abdomen, chest, neck, thighs, calves and forearms
Light and sound sensitivity
Dry eyes and mouth
Fingers and toes periodically swell at the joints.
Whichever side of my face i sleep on usually swells but goes away within an hour or so. My jawline and under my chin swell on and off and have been since July. I should probably mention this only started after having my wisdom teeth removed.
I almost constantly stay hungry and if I don't eat every hour or two I literally fall asleep
I have sudden severe urges to go to the restroom. I have urinated on myself if I can't make it to the restroom in time. I also sometimes urinate on myself upon standing after I have been to the restroom.
Nausea
Almost constant popping in my left hip
Very easy bruising and prolonged healing. I have a bruise on my shin from the end of August that is still healing.
I have had a rash on my hands since I was 8 years old (I am now 19). It also occurs on and off in my scalp and in and behind my ears. It is thought to be psoriasis, but I have to go to a dermatologist to officially be diagnosed.
It is suspected that I have psoriatic arthritis or lupus and possibly type 1 diabetes as well. I should probably add my grandfather had rhumatoid and my brother has had his diagnosis narrowed down to either rhumatoid or lupus.
I've tried googling my symptoms in the past and they don't all seem to be consistent with one thing. I realize different people have different experiences with fibromyalgia and auto immune diseases, but does anyone else have similar symptoms? If so, what (if anything) were you diagnosed with in addition to Fibromyalgia? What seems to make your fibromyalgia better? What seems to make it worse?
I was also curious if anyone else has been prescribed Metaxalone or meloxicam. If so, did you have any bad side effects? Did they help with pain and/or spasms? I am not worried so much about stomach problems from the meloxicam because I just had an endoscopy about 2 days ago which thankfully looked great. However, because of my heart tachycardia/irregular beating situation and raynauds, I am slightly afraid it might cause more circulation type issues. Any information provided would be extremely helpful. To anyone who actually took time to read this entire thing I apologize it was so long. Thank you so much for taking time out of your day to read this.