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Seeking a diagnosis

Posted , 7 users are following.

red83
red83

I have been back and forth to my doctors several times and feeling constantly fobbed off

Some of it is probably down to the fact that I suffer from catastrophising anxiety (had never heard of it but basically my doc says I will convince myself of the worst possible outcome of any scenario) I was told this isn't medical, its just the way I'm wired......which was helpful. I had originally scared myself senseless when symptoms started as my mother passed away from Motor Neurone Disease and I convinced myself that I had the onset. The Dr has advised me the sypmtoms I have is not how the disease would present and sent me on my way. However I still know there is something not right. I wake in the morning with stiffness in my hands and feet. My shoulders neck and back feel stiff to the point that my head feels heavy on my neck. I have muscle twitches that jump from one part of my body to another and have days where one arm/hand feels achy and uncomfortable but then the next day it van shift to another arm or leg and hips. I also have periods where I feel shaky inside.....does that make sense

Sorry for the long post but I was hoping someone who had a positive FM diagnosis could tell me if they had experienced these symptoms.

1 like, 13 replies

13 Replies

  • JerseyKaz
    JerseyKaz red83

    Posted

    I have fibro and cfs and pretty much all your symptoms amongst others; however these symptoms can be caused by other things so you need to push for a cause. It could be something as simple as a low magnesium or iron or even thyroid problem..which can all be mostly sorted with just medication. Its very easy to think the worst when it could easily be someting treatable and manageable. Stress and worry will typically make illness worse so you need to be careful. I would go back to your gp and ask for some blood tests to start ruling things out for you. After the blood test, it might be worth taking some mineral supplements like magnesium especially, as it can help a great deal with muscle twitching. Also reduce caffeine intake as its a stimulant. Possbly seeing a chiropractor or physio might help as they could help give ideas for why you get the stiffness..arthritis maybe? hope that helps? cheesygrinJK
    • red83
      red83 JerseyKaz

      Posted

      Thanks for your reply. I've had my Thyroid and Mg checked and both normal. Also cut down on caffeine. I think you're right and the anxiety makes it worse, still going to keep pestering my doctor because I know there's something not right. Tired no matter how much sleep I get and pins and needles as well as the others I mentioned. From the look of some of the threads on the forum I'm guessing it'll be a while before I get any answers based on others experiences x
  • deb_43174
    deb_43174 red83

    Posted

    My symptoms began right after I went through a stressful time. I do know how my fibromyalgia started and have confirmed this with my doctor. 

    I do have pain daily. Triggers such as Stress and weather seems to make it worse. I do practice yoga and meditaion as well as excersie. That all helps.

    And I have changed my lifestyle a bit ... Napping, saying no to things that I don't want to do etc...

    I do think I am going to try and get another opinion though. 

  • wendy147
    wendy147 red83

    Posted

    Hi Kaz  Your syptoms sound very similar to maine althought I have been fortunate enough not to have been under any stress. I was diagnosed with FMS but a new diagnosise by another Rhumotologist is Polymyalgia as I had very high inflamation indicators in a CRP blood test I had. I would suggest that you as to see a Rhumotologist as mine seam pretty clued up. However,  as indicated in two differnt diagnosise it is not the easest thing to get to the bottom of. I am much much better after going on Steroids.!    Good luck
  • vjl56
    vjl56 red83

    Posted

    Hiya Red. I go with what others have said here. I would definitely ask for a rheumatology referral. Stand up for yourself with your gp and don't be fobbed off. Your symptoms could well be FM or some kind of arthritis - I have both, there are times when I'm not sure what causes what. But at the end of the day it's a low immune system thing and stress can indeed play a part in some of that. Take care good luck and keep posting.

    It will also help your anxiety to get a definite diagnosis. VJ

    • deb_43174
      deb_43174 vjl56

      Posted

      I am so glad everyone has communicated the triggers ie stress weather. It confirms what I know causes mine
  • terig
    terig red83

    Posted

    hi red...i was told 15 years ago i had fibro and now i am using a walker when outside my home and have use a wheelchair at times too...my app. with my neruo yesterday left me hanging, like i told 'ilmak' i have fasciculations in the tongue elswhere feet hantd cramps breathlessness and he didn't confirm either fibro or ALS, MS has been ruled out though....he put me on Lyrica...keep looking for an answer if your mother had ALS i would go back to her specialist or an ALS clinic!
  • angela46100
    angela46100 red83

    Posted

    Hello I have fibromyalgia and it sounds all to close to home.....there is a blood test its called the fibromyalgia blood test its cost are out of pocket of $740.00 us dollars and is accurate and approved by the fda Dr . Gillis is the one who oversees the test the name of the company is called epic genetics. There is also a book you can buy from amazon called what doctor's wont tell you about fibromyalgia. I have a friend from england who has fibro and lives here in the states...who sent this book to me this diseases eventually takes over ones life. The book sugested that I use guifenisen. I was taking lyrica cymbalta and hydrocodone and still became bed ridden over the holidays as I couldnt walk it was too painful. Until I started the guifenisen I was then able to walk again. The change in weather makes the condition worse a constant burn in my lower back, front and back thighs along with burning in hips hands....cant sleep , ibs, forgetfulness, and constant pain is called a flare due to stress, change in weather...etc. its seems as if everytime I fight to get control of this disease it finds a way to come back strongerhMy fibro protacol:

    4800 mg guifenisen ...2400 mg breakfast and dinner Nacsent iodine ...5 to 6 drops daily in distilled water

    35%food grade hydrogen peroxide 1 drop taken with a cup of orange juice or distilled water

    Turpentine & honey .....the ratio is 3 to 1 = 1 tablespoon of turpentine to 3 tablespoons of honey

    Trace minerals can be taken in distilled water

    Plain yogurt to put enzymes back into stomach from loss do to alkalizing mixture for pain.

    Vitamins:

    of oregono 5 drops for breakfast and dinner in distilled water

    500 mg grapseed oil extract for breakfast and dinner

    30 billion ultimate flora probiotic breakfast and dinner

    S.boulardii for breakfast and dinner

    1000 mg vitamin c

    1000 mg L-Glutamine

    500 mg grapeseed extract for lunch

    • angela46100
      angela46100 deb_43174

      Posted

      Hello deb these things im doing works the alkaizer is amazing I dont suggest anyone do this without consultation with a medical doctor however ......the results are working if you would like to know more please feel free to ask....I am now researching ozone therapy and may go to nevada for treatment xxx soft hugs.
  • red83
    red83

    Posted

    Thanks everyone for your responses. Was back at the doctors this morning, no mention from her of CFS or FM. I still think she thinks its all anxiety based. She has now referred me to a neurologist which I admit put the fear of god up me but she was quick to point out she is doing it to allay my worries as she would have been perfectly happy to just send me away again! So I'll just need to wait and see how this appointment pans out. X
    • wendy147
      wendy147 red83

      Posted

      Don't worry about seeing a neurologist. I was referred initially and the Neurologist said  Rhumotologist would be able to help more - which they have! At least  get into the system and hopefully you will get somewhere.! Good luck!
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