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Exhausted and confused

Posted , 7 users are following.

jeanne-mar82023
jeanne-mar82023

Hi, hoping someone can help me. I have been in pain for about 8 years now. Whole body hurts, mainly back, traps and neck. Dry mouth and down there where it matters. I never feel good, cant remember when last I did. Often dizzy, alwyas very tired, I cant exrcise at all, used to be a personal trainer and now I cant even walk to the shop. I feel dead and hating every minute of it. Dont have a lot of faith left in doctors as they have been giving me quite the run around. Now, I am on a mission to sort all this out, went for blood test, twice and both times came back positive for Sjogren's, but the Rheumatologist still doesnt think I have it as I dont have dry eyes. Can I have it without dry eyes? I dont even want to ask her questions anymore, seems like you not supposed to ask doctors questions, just sit, listen, accept and feel like poo for the rest of your life. Please can someone shed some light on this for me. I also have 0.00 testosterone.

0 likes, 34 replies

34 Replies

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  • jefferson89822
    jefferson89822 jeanne-mar82023

    Posted

    Hi Jeanne-mar82023.........i'm Jefferson. DRY EYE is an integral aspect of Sjogrens. What caught my eye was you last comment =0.0 testosterone. To me this backed up you earlier comments abouit yourself. I am no doctor, but have you discussed testosterone therapy (e.g. patches) with you GP at all?
    • jeanne-mar82023
      jeanne-mar82023 jefferson89822

      Posted

      Hi Jefferson, I have gone off the pill (skin going nuts) and seeing the gynae soon. Not keen on it though, hope my body adjust naturally after going off the pil.
  • barbara98940
    barbara98940 jeanne-mar82023

    Posted

    Hi, have you had tests for an underactive thyroid? Many of the symptoms are similar. Ask your GP to do TPOA and TgAb tests. Also vitamin D and B12 deficiencies can make you feel rubbish and if Ferritin is under 70 you won't be absorbing the thyroid hormones properly. So, to summarise: get blood test to check: TPOA, TgAb, Ferritin, vit B12, vit D. All the best.
    • jeanne-mar82023
      jeanne-mar82023 barbara98940

      Posted

      Hi Barbara, yes, we have checked it all, the only other thing besides Sjogrens anti-bodies is the low Test that came up. I also went for colonoscopy and gastroscopy yesterday (have diarrhea most if the time) nothing major came up, but he did 3 biopsies, should know by Monday. What I am mainly confused about is why am I testing positive for Sjogren's? That and why we cant figure out what is wrong with me. It is extremely frustrating. I am also going for an MRI soon for a bad spot in my back that always hurts and there is something that I can feel, in there somewhere and it hurts like hell when I touch it.
    • barbara98940
      barbara98940 jeanne-mar82023

      Posted

      You are having a rough time - but keep digging and don't give up. I felt rough and after 14 years they found I had an underactive thyroid. Just a thought, even females are supposed to have some testosterone my muscle pains and diarrhoea are due to food allergies and intolerances.
    • jeanne-mar82023
      jeanne-mar82023 barbara98940

      Posted

      Thank you Barbara. I am hoping after the scopes and biopsies that something in the line of food allergies come up, considering a full allergy test, but heard those arent very accurate. Appreciate the comments.
  • aitarg35939
    aitarg35939 jeanne-mar82023

    Posted

    Yes you can have Sjogren's without having dry eyes. My dry eyes came about 5 yrs after initial diagnosis based on dry mouth confirmed with blood test. I don't know about all your other symptoms. Do you have some form of arthritis especially RA?
    • barbara98940
      barbara98940 aitarg35939

      Posted

      Hint: Before sending a reply, 'select and copy all', then you can just re-paste and edit if it gets moderated.
    • jeanne-mar82023
      jeanne-mar82023 aitarg35939

      Posted

      My Rheumatologist doesnt believe its RA. I started using a certain 'green' oil and I dont have pins and needles anymore, I sleep! Which helps a lot and I can now handle a gentle massage. Tried all sorts of treatments and yoga, was in tears all the time. So much better after starting the oil. Oil, sleep, very strict diet and I am better, but as soon as I go off the track I feel terrible.
    • aitarg35939
      aitarg35939 jeanne-mar82023

      Posted

      Hi Jeanne

      Am so glad you've found something that helps. I will have to try some.of that oil just to see what happens.

      Aitarg

    • jeanne-mar82023
      jeanne-mar82023 aitarg35939

      Posted

      Hi Aitarg,

      I rely on it now so much! The best 'meds' by far, I avoid pain tablets as much as possible. I highly recommend it. 

      Have a good weekend.

    • barbara98940
      barbara98940 jeanne-mar82023

      Posted

      What's the name of this green oil please? (I think the site rules say it's ok to say if domeone asks).
    • jeanne-mar82023
      jeanne-mar82023 barbara98940

      Posted

      Hi Barbara, its the word that keeps my messages being moderated! Starts with a c ends with an s ☺️Can....s
    • barbara98940
      barbara98940 jeanne-mar82023

      Posted

      Would you mind private messaging me it? Or give me the middle letters on subsequent posts?
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