• 15 days ago

    Fibro?Ms? something else? in pain and need 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

  • 10 days ago

    RE: Fibro?Ms? something else? in pain and need answers!

    Try the antianxiety medication for 2 to 3 months. Maybe with a bit more sleep you will be able to do more. Keep a daily pain journal, track every med you take and if you get any relief and how long it lasts.
    My primary care physician diagnosed my fibromyalgia. I had been his patient for 8years. Some Doctors Specialize in Treatment of Fibromyalgia. Try to find one.
    I have many of the same symptoms you list. The Stress of not knowing what is going on does cause anxiety and insomnia. By taking the meds and daily tracking of symptoms your doctor will have more information to rule out other things. Good luck
      • 9 days ago
        thank you for the reply! I am thinking about trying the medication, (Zoloft) but i've read so many horrible reviews on it:( i'm still not sure!! did any of my symptoms sound like fibro to you though? or what were your first symptoms/symptoms now if you don't mind me asking! also has any medication helped you?
  • 10 days ago

    RE: Fibro?Ms? something else? in pain and need answers!

    symptoms that you have just wrote down I went through I'm still going through a few of them nothing like like I was the 5-6 years I was going through these pains everything you described I won the $21 and so many primaries so many neurologists everybody gave me different diagnosis it's different medications I stopped working on my land SSI and stuff driving because I didn't notice the pins and needles in my feet I couldn't sleep at night had a taste in my mouth my hands my arms my legs I was trying it was unbelievable how my body was I had more of head lumbar thoracic..5/6 over a few years. Would go to er..drs..cry..fight..tell my symptoms no-one listened to me. There's so so much more I can tell u and i should but I'm tired lol but 15 days ago I went to a neurosurgeon that my friend told me about I told him all of my symptoms because my leg was so stiff and numb and tingly and got so heavy I was actually dragging it he asked me if I ever had an MRIs and I told him of my lumbar thoracic and my head and ms als lupus etc was a ruled out and every type of disease they checked for was neg.he asked me if i ever had an MRI of my cervical spine and I said no he scratched his head and could not figure out y thr drs i went to would not give me an MRI of my cervical spine so he gave me a prescription I went and got an MRI 2 days later he called me and told me the problem was I had a compressed spine and I had bone spurs growing that were pressing on my nerves that went to my arms and my legs besides the symptoms with my arms and legs I would sweat I get numb tingly and it would effect of my organs it just doesn't affect your back the symptoms that you had I had I had surgery 6 days ago it was 5 hours 5 stitches later I woke up...not 100 hundred percent but no pain at all..i still have alil numbness but it's bc of sum damage bc of years of damage but therapy will fix it. I have all the symptoms I did. I thought i was going crazyy.. if u look under all symptoms of compressed spine or spinal stenosis u can reed up on it please ..my email is above if needed..i swear to u I went threw all u described if not more. Please message me if u want but u have all of my symptoms.
    I just had had surgery and feel 99% better. Look up ACDF SURGERY
    I'M HOPING I CAN HELP YOU.
  • 10 days ago

    RE: Fibro?Ms? something else? in pain and need answers!

    Hi it's me again I'm so sorry for how my message came out I'm using talking text and the spell check was not on so a lot of my message to you does not make sense please try to figure out as much of it that u can LOL and I can rewrite it tomorrow if you want you can message me privately but every symptom you have I had I'm so sorry for how it came out.. runner x
      • 9 days ago
        Thank you for the reply! ment alot:) what was your diagnoses though? the spinal stenosis? or did you have something else aswell?
  • 10 days ago

    RE: Fibro?Ms? something else? in pain and need answers!

    I think you should try the medicine they gave you. You maybe surprised that they may help you! The medicine for anxiety has helped me with a lot of symptoms that you have described. I know it doesn't sound right! Just try them for a couple of weeks and see if they help, at this point it can't hurt!
      • 9 days ago
        thank you for the reply! and I know i'm starting to think that I should try them.. but i'm just not sure:( i've struggled with anxiety for a long time and I feel like I know it well enough and and myself and body to know the difference between something actually physically wrong or something just being my anxiety. I've also read so many terrible reviews on the medication I was prescribed, Setraline (Zoloft), so I just don't want to start taking something that's going to make me feel worse from so many side effects :( But i'm curious to know what symptoms from the anixety that you said to have the same? and also what medication you take for it that seems to help?! if you're willing to share it could be really helpful:) but if not I totally understand, thank you again for the reply!
  • 10 days ago

    RE: Fibro?Ms? something else? in pain and need answers!

    My journey started in the 90's. Very similarly. Not the sinus infection, but severe pain, widespread diffuse, the fog, anxiety, inability to sleep. I took so much ibuprofen I it is no wonder I didn't kill my kidneys. 4 hot baths a night. I was working full time as a nurse in a drs office. I did at first have a moderately high ANA, RA , ESR and it slowly came down to normal with overdosages of steroid which could have killed me. Years later still just functioning all I was doing in my life was basically working , to help keep my family income so we could make it. I would have periods, brief, of feeling better, and I would over do it and wind up feeling bad again. Stress is the worst thing on your health no matter what your diagnosis is. Approximately 20 years down the road, it was found I was positive for the Lyme and Rocky Mountain Spotted Fever , so at some time I had both of those diseases without being treated. I've seen Rhematologist over the years, internal medicine, had back surgery by neurosurgeon, severe arthritis in my lower back, and up and down my spine. It would take me all day to list the things I've tried alternatively and traditional medicine. I've read extensively, heard of so many similar experiences. I exhausted all organic causes and I would encourage anyone with a life altering change in health to do so. In the end, what works for me, is first lowering the stress in your life, believe me I know how difficult that is to do. During this journey I lost my husband of 23 years suddenly to pulmonary embolism. My children went through divorces. I remarried to a wonderful man who is so supportive and helps me tremendously. I go to my chiropractor regularly, I have body work done, these people are hard to find, drink plenty of fluids and eat fairly clean diet. Avoid gluten, very little alcohol, avoid sugar and eat very little red meat. Take supplements that I need like vit d, multi vit, vit e, c, and coq10, iron as I'm iron deficient. Go regularly to my dr who I found over 15 years ago that believes in traditional medicine and non traditional. Supports and believes my symptoms are real and treats me with dignity. That is so important. I don't expect the impossible from him, he evaluates and treats me as we go along this journey. Having your family and those around be supportive is so essential no matter what is your diagnosis Or illness. Rest and pace myself. I probably would have done better if I had instituted these changes in my life to start with but I didn't know back then even as a nurse. I see a psychiatrist because this caused a lot of self doubt and mental anguish not knowing what was wrong. I try not to worry about tomorrow no more than I have to because as the Bible says each day is sufficient for its own anxieties. Keeping my body in a low inflammatory state is essential. Am I better? In some aspects, my bad days are better and I have more good days. I've aged since this all started over 25 years ago. What's caused it? I'm not sure. I believe a combination of things. Read read read and find supportive health care people in all areas, most of all , don't lose hope. Enjoy the minutes that are okay, and look for humor as often as you can. Laughing is good for your body even when it hurts. I wouldn't presume to know what is going on your body or life. I wrote this to let you know, you are not alone, which chronic and unknown illness can cause, to give you hope to keep fighting. Be careful of people who suggest certain medications over the internet who are not qualified to prescribe, even though well intentioned. Know nothing of your medical history and who you are as a person, we re all unique and need to be looked at and treated that way. I wish you the best on your journey and hope you can find answers. The unknown is our greatest fear.
      • 9 days ago
        Thank you so much, this was really insightful and ment alot :(
  • RE: Fibro?Ms? something else? in pain and need answers!

    Hi my name is Teresa I have had some of your symptoms if not almost all of them ,I knew I had a vitamin B loss deficiency I tried taking vitam B 12 1000mg one in the morning one in the late afternoon I started drinking more water and walking in the evening it seem to help , I'm not sure if we are both experiencing a Nero thing like nerve damage is what I believe , now I'm taking Valium , oxycodone for pain and phenegren for nausea, I've had diverticulitis and severe migraines and nerve damage , fibromyalgia , and few other health issues , I learned that Parkinson's runs in the family and am going to be tested for it both my brothers have already been confirmed , I would go to a ENT doctor as well if you can the things that help me the most is staying hydrated drinking vegetable juices and water or smoothies , vitamins and alil exercise, your very young ,are you around anything chemical wise or work around chemicals ? You could be having allergies also severe ones I can't even wear perfumes or use heavy cleaning agents .I would try n do some research on things your symptoms that is which I'm sure your doing I'm sorry your having these issues , I know deep breathinkg and some yoga stretching baby steps helps your body is maybe deficiency in some way perhaps , I read your thread it spoke to me , I hope this helps its so frustrating to be I'll and not have answers Now with that said I do think you should try n find another doctor I can't tell you what's wrong I can tell you of my thoughts and what I have gathered from information from my illness's The last thing I ever wanted was to be on pain meds but they have helped its not a cure all but a bandaid my advice is for you to try n see if small things help , such as allergies , vitamin deficiencies, hydration and maybe some meditation or yoga , I've had some tell me honestly that I live too close to a power grid a big relay station my house is close to an industrial neighborhood that is a concern to . I don't know you but I'm concerned please be easy on yourself and try not to give yourself aniexty try to relax and take one day at a time an thin about the ENT doctor also inner ear problems create havok also , I hope you find your answers .Also melatonin helps small doses in the evening .I hope this helps .
  • 1 day ago

    RE: Fibro?Ms? something else? in pain and need answers!

    I had the same symptoms in my early 20s. After several years of suffering I gave in and took meds. It really helped. Try the meds they gave you. They may take a few weeks to work but you have nothing to lose! Best wishes. :)
  • 1 day ago

    RE: Fibro?Ms? something else? in pain and need answers!

    Wow honey you have gone through the wringer I must say. I was surprised to hear it was not Ms. First of all I do think you should take the anti-anxiety medication simply for the fact that all of this going on has got to be causing you anxiety and stress and some of the minor symptoms may be causing you anxiety and maybe causing you to experience some of these symptoms. Please take the anti-anxiety medication and you may find that some of the Lesser symptoms may go away. As far as the numbness and tingling I don't know what to tell you honey you definitely should see an orthopedic doctor for what's going on in your legs and your back. You could have an impinged nerve or something to that effect. I wish you all the best of luck and please please please see a neurologist or an orthopedic doctor right away. Please tell me where you are located because if you are in certain States I can give you a good recommendation for one of these doctors. My heart goes out to you darling. Please try to anti-anxiety medications to put your nerves at ease darling. Please keep us updated on how you are doing.