Constant numbness in face and severe pain

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Hello all,

I'm in desperate need of some insight . I've been diagnosed with mctd, I am in constant pain, major stomach issues and insane numbness in the face and left side of arms, legs that comes and goes depending on how I'm feeling . Nausea and headaches that keep me in bed for days at a time, and the numbness feeling making me completely off balance and unable to function. Neck pain is terrible and goes out on me completely for days from time to time. Reumotologist tells me I have a mild form and there is nothing to do but I am non functional and cannot get through many of my days. The only thing that often helps, although this sounds insane, is beer !! How is this even normal? It's like a serious pain killer for me, it doesn't always work but seems to be what works best compared to over the counter stuff! Anyone else experience this ? I'm at my witts end, I don't know what to do anymore ? I cannot function! I haven't worked in now in almost 3 years, I just got married and i need my life back and need a job! Can someone shed some light on this ??? I try to pin point triggers but just so lost now. I've seen masotherapists, ciroprators, Accupuncture, naturopaths, doctors, run tests, and all my family doctor wants to do now is put me on anti depressants, which I don't want to take. I'm so desperate for answers and a solution to have a semi normal life ... help please !

0 likes, 11 replies

11 Replies

  • Posted

    hi Donna, poor you. Yes that's my life right there and I have something very similar. It is a nightmare to get proper treatment sometimes even after diagnosis. OK so if you live in the UK it might be easier for me to advise you what to do. If you don't then a bit more tricky but hopefully I can still make useful suggestions. What area of the country are you based in? I wonder where you were diagnosed with mctd?? You need to see someone who will treat you. 

    I so understand what you mean about beer being your only solution. The problem is that normal pain relief probably won't work for you and alcohol numbs the pain and just generally makes you feel better when you're suffering like that. But there is treatment out there if you know where to go for it. 

    If your current specialist is refusing to treat you for this then you need to change doctors. This is so painful I know what you're going through. I had to change doctors twice and finally got someone great who treated me properly and I am currently in a kind of remission after a long treament. 

    Give me an idea of where in the country you are and I can hopefully recommend a plan of action for you. Take care. 

    • Posted

      Hi Margaret.

      I'm in the same boat at you's. My diagnoses has not been confirmed yet. I'm on the waiting list for rheumatologist. The waiting time is 6-9 mths. The pain is unbearable. I am now getting tremors in my left hand. Any help would be appreciated. Kind regards lesley

    • Posted

      God I know long wait at the moment for appointments. Where are you based Leslie?
    • Posted

      Hi Margaret

      I'm based in Ayrshire Scotland. Did you at any point get a numb tongue. The gp has started me on some meds to try and cypress the joint and muscle pain. Where are you based?? What help or support are you getting.

      Thanks again lesley

    • Posted

      Yes numbness in different areas. It can strike anywhere. I take it you are being referred somewhere in Glasgow for treatment. I am Scottish but London based. Go to Cambridge for treatment. It is hard to find something that works. I have used mycophenolate with some success but moved onto other meds. It is very difficult to get good treatment. Do you use gacebook? If so can you join the Vasculitis UK support group. You can get great tips on there and contact with others in your area who know where best treatment is and just good for general tips and support x
    • Posted

      I'm just being referred to Ayr. I will have a look at fb. I feel as if daily duties are a strain. How do you manage . Xx

    • Posted

      I have been diagnosed over 12 years ago. Had to give up work. Was in constant pain with numerous problems. Have had a long treatment with interferon and am now in a sort of remission. It is a very difficult condition to live with. What sort of treatment are you on? Margaret 
    • Posted

      At the moment just on tramadol for the pain. Melxacom for inflammation and another tablet to reduce uric acid. Over the last 3 yrs I've had 9 ops for anal fistulas which they think is inter connected to everything else. Oh forgot I've got drops for my eyes and mouth . Xx

    • Posted

      Does the tramadol not work for you ? I was put on tramadol . Im basically ok during the day but when late afternoons and evenings come just PAIN .  how does one get diagnosed with mctd ? what are the symptoms there of ? I too have no diagnosis .


    • Posted

      The tramadol dull some of the pain. Go said to take paracetamol inbetween. Like you my diagnoses is not confirmed as of yet. Go says he is sure it's connective tissue disease all through my body . Hope you feel better soon

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