• 2 months ago

    Could this be Fibromyalgia?? A long read, but see if you can figure it out! in need of answers :(

    Here's a little Journey of my health over the past couple months. I'm at my wits end! I don't know what to do, I'm only a 19 year old female. Any advice or comments, suggestions, inferences or hypotheses as to what could possibly be going on with me would greatly appreciated. (writing this with shaky hands), here's a little in sight of what's been going on/ when it started and the symptoms i've been experiencing. I've wrote down the dates from day 1 to present (which might be a little off) *Prior to the first date i've listed below, I was experiencing other symptoms over the course of a month but gradually. Fatigue, feeling like I was in a fog most of the time, trouble remembering things, concentrating, just didn't feel all there. I noticed my right eye felt as if it wasn't as strong as my right one (blurriness). My right ear also felt plugged all the time followed by a pain on the right side of my face that was connected from my ear to my jaw that lasted a little more than a month but has now subsided. Things such as clumsiness, tingling in my hands and feet and weakness were also experienced.

    *May 27th 2017* Was when I first went to the ER for an excruciating headache, I was given an IV + headache medication, I felt this feeling of general discomfort throughout my body as the medication was going through the IV to my arm (have not felt the same since, it was like an irritable feeling that I still sometimes experience.)
    A few days after that I began to feel very shaky and just not okay. Was still having problems with my right eye, was also continuing to suffer from the intense headache listed above but it was now causing a burning sensation in different areas of my head and the back of my neck. This headache and feeling of pressure/ burning sensations continued on for about a week or so.
    *June 3rd* was STILL experiencing this same headache/pressure and burning sensation, so I went back to the ER. After waiting for 4hrs+ at the ER just to see the doctor, he examined me and didn’t think anything too serious of the headache suggesting a possible sinus infection. I told him I didn’t think it was just a sinus infection after mentioning a history of brain tumour in my family, I asked for a CT scan of my head just to make sure. Hesitant to give me the CT scan because of his doubt that there was anything seriously wrong (such as a brain tumor) he prescribed me sinus infection medication and sent me on my way.
    *June 7th Went back to the ER with the same severe persistent headache and burning sensations throughout my head and neck along with a few new symptoms that presented themselves such as weakness as well as a burning sensation on the top of my legs. I was seen by a different doctor this time, who thought a CT scan was in my best interest. I agreed to the CT scan of the brain which came back as in fact sinus inflammation in the brain. I was given RAN- CLARITHROMYCIN 500MG & PMS-DEXAMETHASONE 4 MG. Although a sinus infection was the only thing to come of the CT scan, the symptoms I had been experiencing and explained to the doctor earlier ex. burning in my neck and head, trouble with my right eye, intense migraines, clumsiness, cognitive issues (poor memory, unable to concentrate) "brain fog", muscle weakness, suggested him to believe it could be something more, he mentioned a possibility of MS and told me he was going to order an MRI of my brain to rule it out.
    *After taking the medication for the sinus infection the headaches did stop*.
    From June 7th - 16th awaiting the MRI of my brain the doctor from the ER had ordered I was very stressed and depressed about thinking MS was what was causing all these symptoms.
    I was under extreme amounts of stress. At this time I started noticing the fatigue becoming worse where I would just have to lay down due to feeling very weak and physically exhausted. Also at this time I noticed I was having sleep troubles. I would have a hard time falling asleep even to just nap even though my body was so tired, my brain would just not allow me to sleep. At night time especially I would also have trouble falling asleep and staying asleep as I would wake up every couple hours. I also noticed I'd developed a slight tremor in my right hand/arm whenever I would lay down. The tremor was not as noticeable to the naked eye as it was within my body, it would keep me awake as well due to just being uncomfortable. Within the next two weeks of experiencing these symptoms I also noticed a decrease in my weight. I lost a total of 14 pounds unintentionally, but possibly due to extreme stress.
    *June 17th I had the MRI of my head. The tremor in my hand/arm got slightly worse as you could now see a slight shake with the naked eye, I also noticed my legs would twitch while laying down and feel as if they had a slight vibration to them coming from the inside.
    *June 19th exhausted from only getting maybe 1-2 hours of sleep a night accompanied by the weakness in my body and tremor, I also noticed an irritable feeling in my upper back from time to time making it very uncomfortable to lay down or to sit for long periods. It felt almost as if I had restless back syndrome that persisted throughout the day and the night. Sometimes this feeling would go into my arms, as well as the burning sensations on the top of my legs continuing to persist.
    *June 22 Was my appointment with the neurologist to discuss my prior MRI scan of my brain to see if MS was the reason behind these symptoms or not. I and was told by the neurologist my brain scan was clear having no lesions, and that MS was ruled out. After explaining to the neurologist my still existing symptoms they did a physical neurological exam confirming it was still not MS. They then suggested an anti anxiety medication. I had an appointment with my family doctor that following day, and explained the persisting symptoms I was still having. My doctor also related it back to anxiety and prescribed me with an antidepressant/anti anxiety medication which I have not taken because I do not agree that these symptoms are from anxiety. As well as ordering more blood work, checking levels, deficiencies and ruling out any other scary things such as Lymes, Lupus, RA, & crohn's disease. *All blood work has came back normal, and negative for any autoimmune/rheumatic diseases*.
    A few weeks later with still no answers and the same persisting symptoms, along with some new ones that are becoming quite concerning. I’m now experiencing widespread pain throughout my body. These pains come and go hitting my body in different areas giving me extreme muscle pain mainly in my back, forearms, shoulders, hips, knees and buttocks. The pain intensifies in different areas, the other day I woke up with my upper back aching for hours and then it would move down to my lower back. Then the next day my back wouldn't hurt any more but my left forearm would be in excruciating muscle pain as if I'd just exercised heavily the day before (which I did not). Other extremities such as my ankles, hands, feet, toes and fingers would just ache,pain and almost feel like little electric shocks(mainly in fingers and toes), throughout the day accompanied by the burning sensation. I am still not able to fall asleep or stay asleep throughout the night. I’ve woken up overheating and sweating, not being able to swallow. A rash that appeared out of nowhere on my neck (went away after an hour) along with a very flushed face. Restless back and leg pain (in the day and at night). At this point I just don’t know what to do!! I’m out of answers, very frustrated and in pain :( if anyone has anything similar experiences that followed by a diagnoses or any idea of what this may be let me know!!

Responses

  • 2 months ago

    RE: Could this be Fibromyalgia?? A long read, but see if you can figure it out! in need of answers :(

    The doctor, and especially the neurologist, have tests they can do to tell you if its fibromyalgia. It could be. But no matter what anyone on here tells you, you'll be sent to the doc for a FM test anyway. From your symptoms, I would say it's worth a try. Set up an appointment to test for FM.
  • 2 months ago

    RE: Could this be Fibromyalgia?? A long read, but see if you can figure it out! in need of answers :(

    Hi! Sorry you're feeling so horrible. Hopefully this comment will help you to feel a bit better... 1) A sinus infection is 'not' a brain infection! And it would sure stress you a bit more in thinking that it is. Of course there have been cases of severe chronic sinusitis causing secondary infection to spread toward the brain, this is highly unlikely and ONLY in severe situations where no treatment had been previously administered! One the other hand however, a severe sinus infection can have numerous horrible side effects like some of the symptoms you listed. i.e. Headache, blurred vision (in one or both eyes), dizziness, malaise (generally feeling unwell) pressure on the face/head/eyes etc. & this is but a few! The largest symptom I gathered from your entire post that you only hit on a few times was 'stress'! Stress from worrying that something dreadful is happening to you on top of possible other stressers that you didn't mention! Stress on general can do horrible things to occur to our bodies! To many to list!
    In my honest professional opinion (20+ yrs as a fire/rescue paramedic and ER trauma medic), listen to the doc! Take the entire course of antibiotics, try your best not to worry as much! You're young and your body is highly resilient! If I were to ONLY diagnose from the description, 1) severe sinusitis 2) stress induced from recent illnessss 3) to many internet horror stories !
      • 2 months ago
        hello and thank you for replying as it sure means alot to me!, I did take all the medication for the sinus infection resulting in it going away and the headaches subsiding as I did say in my post, but the things that are concerning me just don't seem like they could just be coming from "stress" :(. I do know that stress can forsure take a huge toll on your body and do horrible things but as a paramedic/ ER trauma medic can you tell me if the burning sensations in my arms and legs/widespread pain as well as the internal tremor i feel at rest on top of not being able to sleep are just things from stress:(? I've read that internal tremors or any type of tremor (correct me if i'm wrong) are usually from damage to the brain? (nerve damage?) i'm not TOO sure, or they can be from underlying conditions such as things like Ms, lymes or parkinson's disease. I'm just not sure, I also don't know what tests I should request to be done. I just want to figure this out and feel like myself again!! any further more advice?
      • 1 month ago
        Hi, I'm so sorry you are suffering and not getting answers. Hopefully I can help.

        Even tho you were "tested" for Lyme disease (it's never plural with an "S") it sounds like you have Lyme and probably one or more co-infections.
        The testing that most traditional doctors use is very inaccurate. The first of a 2-test system, the ELISA test (or IFA or "titer") has a 56% false negative rate. What this means is, if you line up 100 people who actually have Lyme infection and give them all this test, 56 will come back negative when they really do have Lyme.

        You can educate yourself by reading about Lyme at these websites:

        www.lymedisease.org
        www.ilads.org
        www.columbia-lyme.org

        The info on these sites is up to date and accurate, the stuff the CDC and government says is not always correct.

        Also, please watch a movie called "Under Our Skin" from 2008, and the sequel from 2014. Google them and I think they are on YouTube and Netflix.

        I was MISDIAGNOSED with fibromyalgia for 20 years when I actually have Lyme disease and 3 other infections. I had the classic red ring bullseye rash in 1995, board certified dermatologists didn't know what it was. I had all-over pain-- joints, muscles, came and went in different places but all over mostly, extreme fatigue, depression, anxiety, mental confusion, problems with vision and hearing that come and go, memory problems -- you name it, I had it. Finally in 2015, after declining all those years, unable to work as an ER RN, and finally becoming non-functional, a fibro specialist saw a picture of the rash and knew to test me for Lyme with more accurate tests, and it came back "strongly positive for active, ongoing Lyme infection". I now have a Lyme specialist (ILADS trained) and have been in treatment for 1.5 years and I'm starting to get better.

        Please read about Lyme and find a doctor to test you properly. You can get a Basic Lyme Panel thru iGeneX labs in Palo Alto, Calif (google them for contact info) Most traditional doctors will dismiss this as "not FDA approved" but the lab is certified and specializes in this. Also, a more accurate (and expensive) test is the urine PCR test thru DNA Connexions in Colorado. If you can afford this $500, it is worth every penny and accurate because it tests for the DNA of the pathogens (bacteria, Protozoa etc) whereas the Western Blot tests and ELISA/IFA tests look for antibody response of your immune system.

        But Lyme infection is a CLINICAL diagnosis, made by an ILADS trained Lyme Literate doctor (MD or ND-naturopathic doctor) who is educated in the symptoms and history, and the tests are only to help confirm the diagnosis. Lyme is very complicated, controversial, difficult to treat past the acute phase (within a few weeks of the tick bite) and can be expensive as most insurance won't pay for it. But it IS treatable and there are many success stories.

        Please don't follow in my footsteps (by the way, I was tested twice for Lyme (2001 and 2013) with the ELISA and it came back "negative" but that was a false negative. Look at the websites I gave you, learn all you can, and find the correct doctor to evaluate you. Best wishes, Trisha
  • 1 month ago

    RE: Could this be Fibromyalgia?? A long read, but see if you can figure it out! in need of answers :(

    Hi, I have had similar issues before and I do have Fibromyalgia, but I also have an anxiety disorder as well. So it really could be either Fibromyalgia or indeed stress and anxiety (I would still try the anxiety medication anyway because it might actually help. No use in worrying because worrying makes Fibromyalgia much worse if that's what you have!) Also, a Vitamin B deficiency can mess with your nerves so that is a possibility. When I had an issue with the electrical shock feelings and numbness, I started taking Vitamin B12 and it helped. It takes a long while to get that into your system if you're low on it, though. I did not get tested for a deficiency but just decided to up my vitamins. You would have to get a blood test that would look specifically for that, I imagine. So that's a few things to check.