Discussions By Condition: I cannot get a diagnosis.

someone please help me miserable everyday i hurt all the time

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: mistyln1
  • September 4, 2010
  • 00:28 AM

hi i am a 24yr old female and i cant get a diagnoses for what is making life so hard for me. my symptoms are headaches most of the time and lately everyday my throat hurts most the time and the same lately everyday it doesnt burn it just hurts in my neck. i run a low grade fever sometimes last time 8days and i wasnt sick. i hurt so very much constantly i ache all over in my joints bones and muscles it feels like often in my hands wrists arms and that area it isnt mild either it hurts bad i cant even explain how it feels. i feel like im sick all the time i just feel bad my body hurts so much i cant barely make it through a day.i am so tired i never feel rested i feel like a zombie most the time i cant wait for bed and so my body cant rest it hurts so much. i have been diagnosed with hashimotos disease and given medication to increase my thyroid which as slightly increased my energy but not much and thats all nothing else is getting better i keep getting worse. i am treated for depression and anxiety but i am getting even more depressed because there seems like no end in sight. i wish i could explain the pain i am in all the time. im only 24 this is beyond abnormal none of the docs know whats wrong they point to chronic fatigue or something obvious but i cant keep living like this i have to work and i have a daughter to play with and i cant. someone please help me. i have auto immune diseases in my family but have been tested a little and nothin so far i cant take the pain anymore i have been doing this for 2yrs or so and its getting worse. sometimes my symptoms are less or more but eventually i have what i call a flair and its all very bad and thats when i run a fever. anyone out there i need someone

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13 Replies:

  • If your doctors are thinking possible chronic fatigue immunity dysfunction syndrome (CFIDS) or Chronic fatigue syndrome (CFS), I really have to agree with them. http://wwcoco.com/cfids/bernesx.html CFIDS and hashimotos disease can be coexisting illnesses and from your post I do think you have CFIDS. Ive been sick with CFIDS since i was 26yrs old (13 years now), spent 9mths bedbound with it needing care and years housebound. It can be a quite serious deabiliting illness (Im on a disability pension due to it and get 100 different symptoms with it, if its this... your case right now isnt currently too bad, so take care not to worsen it!!!). I strongly suggest you find find a doctor or specialist who specialises in CFIDS as there are things which can be trialed to try to improve your symptoms (eg B12 hydroxocobalamin injections.. i used to have twice weekly for this condition). One of the best things to do when it comes to CFIDS is to make sure you dont go overdoing things and cause "crashes" (flares) with the illness, in which these can permanently worsen things!! You need to cut back and balance (pace) your activities so you are doing about the same each day..and not causing your health to worsen. Find yourself someone who specialises in this illness. Also try not to despair about having this as there has recently been a huge new scientific breakthrou with this condition (MLV or XMRV viruses)... and its possible they may be the cause of it (which means there may be proper treatments for it soon). http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm223277.htm http://www.wpinstitute.org/xmrv/index.html (they own a lab which have been offically approved to do testing for the new viruses.. i cant now think of what the lab is called but if you email the institute they could give you the testing details).
    taniaaust1 2,267 Replies
    • September 4, 2010
    • 07:47 AM
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  • That might be just Candida overgrowth which is very common. Have you done any testing on yeast/bacterial infections? These are symptoms of a common infection which your body cannot deal with for some reason. And basically if you are prescribed wrong medications it would make everything worse.
    Anonymous 42,789 Replies
    • September 5, 2010
    • 07:04 PM
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  • so exactly what kind of doc specializes in cfids? i am in the process of going to docs so i can find one. i do keep getting worse thats just it i have to do something asap. the docs arent saying cfids they just go with chonic fatigue but i will def bring that up to them. thank you for your help im so lost.
    mistyln1 5 Replies
    • September 8, 2010
    • 00:35 AM
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  • anyone else with any info yesterday was the begining of a flare up and it reminds me of the extent of this it is very bad i had to come home from work today because my body is so give out my joints and bones ache and burn so much my body aches like i am sick i am so tired i have no strength i dont even want to move all i want to do is cry i am suffering and its causing some horable mental suffering i dont know what is wrong anyone that has done this or had a diagnosis help. the docs cant come up with anything yet and the pain in my body is to much i feel so bad like i have a permanent virus or flu.
    mistyln1 5 Replies
    • September 8, 2010
    • 01:30 AM
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  • anyone else with any info yesterday was the begining of a flare up and it reminds me of the extent of this it is very bad i had to come home from work today because my body is so give out my joints and bones ache and burn so much my body aches like i am sick i am so tired i have no strength i dont even want to move all i want to do is cry i am suffering and its causing some horable mental suffering i dont know what is wrong anyone that has done this or had a diagnosis help. the docs cant come up with anything yet and the pain in my body is to much i feel so bad like i have a permanent virus or flu.I have same exact symptoms, left work very sick to see pcp. Had extensive lab tests which came back showing Vitamin D deficiency and "markers" showing inflammation all over my body (internally). Inflammation is becoming very common (google it & read about it). The diagnosis was Fibromyalgia & was referred to a Rheumatologist who prescribed Savella, new drug on mkt /antidepressant, which blocks pain. It does work, however I wanted to get to the cause of this condition as I've had these chronic fatigue symptoms since my 20's; last flare up was so severe, I'm still sick. Look at & read information on www.BodyLogicMD for more information. Hormonal imbalance in women (even young women such as you) can cause these exact same symptoms. I am not sure I agree with the Fibromyalgia diagnosis, as it seems to be only a "name tag" for the symptoms which gives medical drs the right to just prescribe pain meds, other meds to act like bandaid & only mask symptoms. BodyLogicMD are drs across nation who get to the causes...their website lists drs in every state and area.
    Anonymous 42,789 Replies
    • September 8, 2010
    • 11:11 PM
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  • they dont think it is fibro i have been to a rheum. but they scratch their heads and say maybe the onset of rheumatoid but i dont have swelling like that disease. they dont know cuz there isnt something staring them in the face. its like no one believes my pain is real cuz they cant see anything but god it is im so sick i hurt so bad my bones and joints are in so much pain my spine hurts my body aches i feel like i have a flu. im afaid i cant be the only one some one out there has to know. im loosing its getting worse i cant handle it mentally. i take anti inflamatory and it doesnt do it. anyone else feel ill all the time and at times like a flare up get real sick i even have a low grade fever now headahce and throat ache everyday help help!!!!!!!!!
    mistyln1 5 Replies
    • September 10, 2010
    • 00:42 AM
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  • Im glad i just saw your post again. If you havent had this illness for 6mths.. the doctors will not give out a diagnoses of chronic fatigue syndrome.. as that is one of the diagnostic criteria to help stop people with other illnesses from being diagnosed accidently with it. The reality of this illness (it really sounds as if you do have this as it commonly appears like a virus or flu esp in the early stages of it) is that half of us end up not being able to work at all and end up on disability pensions due to it. Its serious!! and sadly the more you push yourself there, the sicker you are going to get! You probably do need to think about some how working less or planning this.. as if you dont, the illness will end up stopping you and you will be in worst situation. so exactly what kind of doc specializes in cfids? Thats the real hard thing.. ones who specialist in it are found in all kinds of fields due to this illness affecting so many different areas of us. eg one of my CFIDS specialist is just a MD, another one of my CFIDS specialists is a endocrinologist, another of my CFIDS specialists is an internalist.. and ive just found a fourth with some experience in this illness who is a allergist. So you will need to either ask your CFIDS/CFS/ME association (or whatever it is called in your country) and ask them if they can recommend a specialist. Or.. seek out CFS/CFIDS/ME forums and try to find someone who lives where you do and find out whoever helps them. http://aboutmecfs.org/ has a forum and is a large CFIDS sitei put together a list of the associations about the world at http://www.forums.aboutmecfs.org/showwiki.php?title=Patient+Data+Repository+and+Treatment+Review+Project:CFS+ME+Organisations my story of this illness and how it started is at http://www.forums.aboutmecfs.org/entry.php?502-The-story-of-my-CFS-ME . You will see from that mine started out just like yours is....
    taniaaust1 2,267 Replies
    • September 11, 2010
    • 06:25 PM
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  • i just thought i'd cut and paste my own story to you from the link I posted before http://www.forums.aboutmecfs.org/entry.php?502-The-story-of-my-CFS-ME as i think you need to be joined up to access the blogs there (you will understand then more why you need to cut back or even stop working! Its highly important to cut back on things with this illness). I actually was the same age as you when I got sick 25/26 years just a part of it from my blog The start of the CFS - I was a single parent of two young girls, one who is disabled (she's got a problem like spina bifia). Doing my second full time year at Naturopathy collage. I kept getting what doctors would say was just virus's eg the flu. I'd get temps and a very sore throat, glands would go up (all which the doctors could note) and I'd feel like crap. Every time I was put under pressure at collage eg an assignment due to soon.. I'd develop "a virus" and get very sick. Coming up to exams I got so so sick and kept having to delay my exams. I started the next year of collage, only doing some subjects as I'd only managed to do half of my exams, while still planning and trying to do the rest of my exams. I kept pushing myself trying to do it and get throu but just got sicker and sicker. I ended up getting to the stage where I didnt do anything except go to college and go home straight to bed and sleep, I couldnt even visit friends no more as I had no energy and was far too sick to do so. I ended up having to take too many days off of college very ill so got behind, I ended up having no choice but to defer college.. Somewhere at this point of time, quite a while after giving up with the doctors just saying I had a virus or the flu, (I went to a lot of different doctors.....NO ONE could flu that often!!!) and having a heap of tests which really found nothing wrong in the tests but at one point where the liver enzymes in my blood were too high or something and the doctor got concerned that i may of had hepatitis, saying my liver was breaking down or something.. but after a while things were okay again). I went to another clinic, (Ive tried finding my old records but cant remember what clinic it was) and a doctor there did more tests in which nothing was found and ended up telling me I had CFS and that nothing could be done for it, so at that point I gave up with doctors completely as there was nothing they could do. (This would of been back in 1997) I was basically from there completely bedridden for 9 mths with severe CFS and what I know would of been FM. The only times I left my bed, once I dropped out of college, was to take my daughters to medical appointments (but after a while I couldnt even do that) and to go to the toilet. My eldest daughter who would of been about 9 yrs took over looking after me. She cleaned up after herself and my other child, cooked for us all, did the washing, house cleaned etc. I was too sick to even get up and make meals. I was lucky to be able to stand a lot of the time. At times I couldnt get out of bed. At my worst.. my legs were too weak to be able to hold my weight..and i'd roll/fall out of bed and use the potty I started having to keep there. At times I was too weak after that, the effort of just sitting and using the potty, that I'd end up laying on the floor by it.. unable to pull myself back up onto the bed, I'd have to lay there for hrs, to weak to do anything else. If the water bottles got all drunk.. I'd have to wait thirsty until my daughter got home from school to ask her to refill it for me. I used to drink a lot. This probably sounds weird but my weakness got so bad that it was a struggle even for me to move a finger at times and hard to feed myself and to chew.. just cause every part of me was so so weak. There was a point of time, (I dont know how long.. weeks I assume, during my bedridden time the days would just flow together and I'd just sleep nearly all the time. There was times where I slept for 19 hrs straight!!! without waking at all for food or drink, I was that exhausted and barely conscious when I awoke. It got to the point where I had to be asked to be woken up once a day for dinner as I wouldnt wake otherwise and was missing too many meals). Light was hurting my eyes so I had the blinds kept shut and the room dark... I was too sick to watch anything out of my window anyway. Too sick to watch TV. (I felt too unwell, I couldnt focus on it and follow what has happening and it hurt my head) . I'd have my daughter send any of my friends who showed up away as I didnt have the energy for them . At times I could hardly communicate with anyone.. someone talking to me was hard as I couldnt focus and struggled at times to understand things, to make sense of language. Noise hurt my head. During this whole time I was very feverish, sometimes running with sweat. My temperature for about 9 mths was usually in the 39 degree celicus ranges. I had a ton of pain too when awake...my whole body ached.. every part of me hurt.. all my muscles ached like terrible flu and even worst was the pain in my bones...my bones and their insides hurt severely with a degree of pain only one who's experienced it would know. Fortunetely cause of the CFS.. and the severity of my tiredness and the degree of exhaustion I felt... I had trouble staying awake, it was impossible for me to stay awake.. even with that severe pain. I quite often lost consciousness. When I was awake thou, it was torture, it really hurt to lay still (my body touching the bed hurt it and where my body touched other body parts hurt) and it hurt even more to move, even just a little. I'd lay like frozen on my bed trying not to move but needing to move too.....it was hard to keep my legs still as I had a need to move them and felt a need to move my body if I could. I used to just cry in pain a lot until I couldnt cry no more. It was hard to cry thou.. it took an effort to cry so something I tried not to do. Often I'd have silent tears just running from my eyes.. too weak to even cry properly. Find yourself a specialist in this!! I think its going to be very important that you have one real soon. You may not end up as sick as I did but you may, if you keep pushing yourself. I almost ended up in a coma! and was lucky this illness didnt kill me.
    taniaaust1 2,267 Replies
    • September 11, 2010
    • 06:34 PM
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  • hello taniaaust1 i cant figure out how to reply any other way so i hope you get this again. your right alot of your story sounds familiar im not no where near that bad but i have started this and slowly went down hill to where i am round 1 and a half 2yrs ago i just havent seen a doc for it that long except the past 6 months they brush me aside. the bone pain rings a bell big time mine hurt so bad my and joints i know that pain its horrible. i wish i could stop working cuz i am starting to get very afaid cuz how bad i have got but i have to pay the bills i have a little girl to give a home. i have been trying to find a specialist but having a hard time i will def check out the links you sent. i am afraid of how much worse i can get. still not over this attack im still very ill. the amount of pain killer i take is so bad for me. you have been a great help atleast im not alone i just pray they listen i go to another rheumatologist in oct maybe they can find a doc that specializes in cfids for me. you hear anything else keep me posted thanks again
    mistyln1 5 Replies
    • September 11, 2010
    • 10:09 PM
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  • God bless you and I am so excited to hear from you. Please visit this website www.genesteehealthandwellness.org I am certain you will find this site a blessing. Give them a call as soon as possible meanwhile hang in there help is on the way.
    Anonymous 42,789 Replies
    • September 12, 2010
    • 11:03 PM
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  • Dear mistyln1, Sounds like it could be XMRV to me. Getting tested would be a good place to start, especially if you have insurance to cover it. Talk to your doctor about it. Go to VIPdx.com (lab that tests for it) and email them. They are very helpful. I have a similar situation, with kids and all, and I understand your pain. It's highly likely that help for this disease, although not cure, is close it hand. Don't give up. FrankWD
    FrankWD 1 Replies
    • October 3, 2010
    • 05:35 PM
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  • I have the same symptoms for 2 years now. I had to quit my job a year ago because it got so bad. I was diagnosed with CFS, Reflux syndrome, barret esophagus, vitamin B12 deficiency and have had 5 herniated discs. My eyesight got bad, i had cingular hairloss and asthma. All this over a 2 months period. At first I had depressions because I have been a very active person. I went surfing, sky diving, paragliding, motor cross and from one week to the next after a bad cold I could not get out of bed anymore. Every step I took hurt really bad. Then depression turned to frustration. Like I said this has been going on for over 2 years now. I'm 38 and it seems my life is over. I take 80mg of oxycodone daily and just lay in bed either sleeping or in terrible pain. I take salbutamol and armature for the asthma and omeprazol 40mg for the reflux syndrome and once a month I get vitamin b12 shots.
    Anonymous 42,789 Replies
    • November 10, 2010
    • 03:59 AM
    • 0
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  • I know exactly how you feel I went to several different doctors and finally I was referred to a ruematologist. I had several tests done one being an MRI which showed severe inflammation in my sacroiliac joints. I was later diagnosed with AS (Ankylosing Spondylitis.) I went on Humera and feel so much better it is not a cure all but I have a life back. I still have the sore throats and low grade fevers off and on but the pain is so much better. I don't know what you have but that could be it you have every symptom I had and I really do know exactly how you feel. I sure hope you feel better soon and they find out what is wrong.
    Anonymous 42,789 Replies Flag this Response
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