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Cannot get help

Posted , 3 users are following.

linda1983
linda1983

I need some help because I feel like I was not being heard by my doctor. She just keeps quoting it is aniexty anxiety and the sad part is that I know that is part of it but not all of it.

I think that I may have fibro was thinking my pains were all anxiety and that was it. Three years ago I went to an oroth to see cause I had problems were I would get excruciating pain in my arms my fingers would lock up and I would get Charlie horses in my forearms and they did all the testing and said well not sure what is wrong take ibprophen and eat a banana and it will go away. Never did though and this is 5 years later. Then I just let it go nothing I could do just love the pain crying thinking cutting my arms off would feel better but moved on. Then my neck got so bad and my shoulders that I could not hold my head up. I went to OR for about a year was not getting better so went to Gp and they did an MRI and revered me to Nuro that said I had bone degeneration and ost got shots in my neck and that did not feel better. Just learned to deal with pain throughout the years. Last year I was diagnosed with TMI and could not eat for about 2 weeks still hurts but finally let up a bit.

Then in June this year something really bad happened to me not sure what but I worked out about 2 one day and woke up not feeling good and it was a down hill slide from there on I could not go to sleep. My body was so tense I could barely sit or stand. I slept for basically 2weeks because I would only have enough energy to go the bathroom I could not even do the dishes without a weird feeling throughout my body and then go back to bed. This has been going on since and will not stop and my doctor says it is panic attacks but this is 24 hours a day and it is exhausting. I have been on 2 meds now for aniexty but the sad part is no matter what pill I take there is an underlining pain throughout my body that doesn't go away. Should I just chalk it up to aniexty since there is not a fox to fibro even if I do have it? Feel so lost and am about ready to give up looking for help for this mysterious pain and I feel so alone😔

0 likes, 9 replies

9 Replies

  • Oompa
    Oompa linda1983

    Posted

    Hi Linda, I would strongly suggest you ask to be referred to a rheumatologist, as they can carry out certain pressure point tests to determine whether you have fibromyalgia. Unfortunately this condition comes in so many forms and there is not a lot of research into it, but I hope with more people being diagnosed then the doctors and scientists will find a better treatment than the usual meds. I've tried acupuncture, therapeutic massages, seen a chiropractor and osteopath as well as trial and error on a ridiculous amount of meds, no sleep, pain and as a result of my suffering depression. I am getting there slowly, my current physio is trying unconventional physio so put me on an action plan, and I have also started mindfulness sessions. So hopefully I will see a difference, I have to be optimistic, if not whatever this is will consume me, so don't give up, go and demand to be referred to a rheumatologist.

    • linda1983
      linda1983 Oompa

      Posted

      Thank you for replying

      Every time even Menchen what is going.on with me last week I went in with a long list and all she could say is let's change your aniexty meds and that it was neurological because all the pain was not on one side of my body. I am starting to get depressed because how much pain my body is in and how tired I am,I will.bring it up with her but most likely she will be like it is your aniexty anxiety and here is another pill.

  • mari34228
    mari34228 linda1983

    Posted

    Hi Linda, I went online and found a list (well many lists actually!) of Fibro symptoms (as GP's weren't listening to me either). I copied out all the ones that were relevant to me. I then showed this to one of the doctors. She said 'well that certainly sounds like Fibro'. So I said...'well yes, that is Fibro! I copied down the symptoms from a website!...and these are all the ones that I have'. She immediately referred me to a rheumatologist and I finally got my diagnosis confirmed!

    You know you and your body best. If you feel that something isn't right you deserve a proper diagnosis. Keep pushing for one.

    • linda1983
      linda1983 mari34228

      Posted

      Thank you I will try that but not sure because they have kinda labeled under the hyercondric label when I go in there and the just say anxiety and I feel so sad because before this I was happy not sad or depressed I had pain but learned to deal until this then one day the pain felt I was dying and did not disappear for like 2 weeks and that was because of the meds,but now I am tired weak and achey everyday.
    • mari34228
      mari34228 linda1983

      Posted

      Yes. I'm afraid two of the GPs at my practice just kept fobbing me off too with 'it's just your anxiety and depression'! I was so tired of them telling me to get out for more walks etc! I know at least one of them thought I was a time waster and she made me feel like one. I came out on the verge of tears at times. It was only the third GP that I showed the note to that took me seriously. She actually said 'I think we need to get you a proper diagnosis'!!! Hallelujah!

      I hope you can get someone to listen to you. They need to be made aware what a huge impact this is having on your life. Say to them that you deserve a proper diagnosis if you have to. Tell them you are tired of going back and forwards and not getting any answers. Push push push! It is their duty to help you! I think sometimes they forget that.

       

    • mari34228
      mari34228

      Posted

      Let us know how you get on
  • modelar
    modelar linda1983

    Posted

    Linda, I really feel for you.

    I , as many others understand the condescending manor and pure ignorance when going to you GP for help.

    You know that this is more than anxiety, you know yourself better than anyone else.

    It's very easy to feel diminshed and helpless when going through this illness.

    Sadly your not alone, the sad truth is that doctors and many specialists don't know either.

    Fibromyalgia is a blanket diagnosis for many diseases where the routine tests are not specific to you.

    There a hundreds of tests out there that can potentially show abnormalities / bio markers.

    Please don't give up, change your go, ask for specialists ( because you have a right to, and GPS honestly are dumbfounded) there's many different specialists.

    And seek as much medical help as is possible.

    Do your own research based on your symptoms.

    In time you can start building a picture, and maybe see a private practioner who are not limited to the basic tests your doctor can offer.

    Best wishes

  • linda1983
    linda1983

    Posted

    The sad part is now that I have been marked with scarlet letter "A" and in this case aniexty they just blow it off and basically say you will not die. They claim all my symptoms are due to my aniexty meds even though they were there before I took any meds😖

    Since the really bad thing that I had in June I went to the ER 3 times the first time was taken by ambulance with me feeling naeous and tired and weak got feeling like i was going to pass out and basically told me it is all in your head sent to me with me barely able to stand cried and went on my way all the way home still feel8ng so much pain in my body so much I could not sleep went back to same ER next morning and basically asked me if I was the same person from yesterday and I said yes basically said again it was all in my head and I was in so much pain they are like here is one vicodin and go home. After that I spent about 5 more days.in bed barely even able to move in fear of the pin constantly unable to.dishes or laundry not being able spend time with my kids and then pain scared one day that my whole body was trembling I could barely breathe or at least that is what I felt like and all this time prior as well as have bowel and gas tingling in all my extremities including the right side of my face that felt like it was sliding off like I was having a stroke and hot burning feeling under my skin so I went to a different ER and they did a CT scan said it was fine and EKG and they said it was fine and yet again felt like I was dying with no help. So went on with this for about another week till I had a mental break down and could not take the pain and went to a GO who checked my thyroid and said it was fine and that is were I am now diagnosed with an aniexty disorder in milder pain but still sticking around and told it is all in my head 😧

    • modelar
      modelar linda1983

      Posted

      I wonder if the face thing could be a migraine?

      My sister suffers from them - which she discovered are often triggered by food.

      The last time she had a really bad one it was eating sugar free mints.

      You can have seemingly pain free migraines...

      Worth looking online about that and potential foods connections.

      I've been to A &E a couple of times too - similar sypmtoms and same response...i cried out of sheer desperation.

      Just because there's no apparent cause for your symptoms, doesn't mean nothing biological is the cause. ...its just unknown at this point.

      I can't emphasise how important it is that you research yourself.

      It may help you feel that your taking control and most importantly seek out the specialists you need to help you.

      Have you considered the food aspect in connection to your symptoms?

      Do you think you have any digestive issues?

      Have you tried meditation - you tube have some good ones...it helps calm me/ system when I'm in a chronic flare...when all else fails.

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