Undiagnosed and rare conditions
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Sharp pains

CBJCBJ Member Posts: 1 Listener
I have sharp shooting pains all over that are progressively getting worse. Sometimes the pains burn, sometimes it feels like water is running on me. I have light numbness and tingling and randomly have no bladder control. The pain is from head to toe. I’ve had MRIs of my stomach, back and brain but the doctors can’t find anything. My hands are also becoming sensitive and it’s hard to hold things that require me to grasp with pressure. Ive seen a gynecologist, gastroenterologist, orthopedic doctor, podiatrist (I have a sewing needle in my foot thats been there 25 years) and currently working with a neurologist. The gastro doc says I have a kink in my colon but sees nothing else wrong from my colonoscopy. Other than my creative kinase and B-12 being abnormally high, my blood work comes back fine. I also feel like I’m having heart attacks every other day. I’m vegan (3 years) I worked out up until about five months ago, get all my sleep, not stressed, etc. The pain has been happening about a year and is becoming crippling. 

Can anyone relate?

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi and welcome,

    I'm a community champion here on scope. I'm afraid we are not medical professionals and won't be able to give you any medical advice. Did you ask your GP why your B12 levels are abnormally high? If you didn't then i'd advise you to return and ask that question, if it was me this is what i'd do.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • chiariedschiarieds Community champion Posts: 6,897 Disability Gamechanger
    Hi CBJ - Welcome to the community 'tho I'm sorry to read how you've been for a while. As mentioned above, it's a good idea to see your GP to get their opinion of your high creatine kinase & B12 levels.
    I hope you get some answers in the not too distant future. Meanwhile, this is a very supportive community if you'd just like to chat. Please let us know how you get on.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @CBJ   Pleased to meet you.

    Thank you for joining and sharing.

    Sorry to hear what you are going through.

    I am one of the team of community champions. We guide and advise members of our community.

    My friend @poppy123456 has informed you we are not medical professionals but I would like to add.

    I do have qualifications in Understanding Health Level 2 and other qualifications related. Do recipes on here..

    A lot of the problems with a vegan diet. Well done to you is the amount of nutrition that is needed. Understand taking B12 that is good. All vegan diets have to have a wide range of Vitamins, Minerals and Proteins  you would get from eating meat.

    Symptoms of deficiency included the following.

    Iron lack of Fatigue and Anaemia

    Need to eat more Beans, Pulses Lentils .
    Whole meal bread fortified with Iron
    Green Leafy Vegetables Spinach Kale, Broccoli
    Nuts Walnuts good source Peanut Butter.
    Herbs Parsley 

    As you omitting milk or yoghurt or eggs , think of using Oat cakes often a useful source of iron.  Marmite spread on . Another useful source.

    Because you not eating Dairy used B12 Supplements you need Calcium in the body. Milk, Yoghurt, so one.

    Lack of Calcium can bring the following symptoms of deficiency even though might be taking supplements.

    Fatigue, Anaemia, Pins and Needles, Hand, feet.

    Mood swings. 

    Need to eat to replacements More nuts Almonds good source of Calcium, Sunflower seeds Pumpkin and Sesame seeds.

    Kale the most amount of Calcium in a leafy green.

    One  other point I would consult any Nutritionist or Dietician or as doing any Vegan or vegetarian diet you need to make sure your doing this correctly.

    I am sure you are but always worth checking this out.

    Please may I add I have knowledge and education learnt from recovering from addiction, use wellbeing service.

    Local council community unit. Got my qualifications through them.

    Only by educating yourself doing a food diary excluded what foods causing you harm if any.  Allergies or food intolerances a problems any omitted of major foods groups.

    I do know that it is and can be a problem getting the right information and knowledge to stay healthy.

    Please have a look on line plenty of information and advice.

    I would also look at the information and advice Doctor Ian Marber he is a known nutritionist and food science his book and website informative.

    Known as the Food Doctor.

    Please if you have any questions I would if I could answer. I am not a Doctor or an nutritionist just a member of our community.

    Have a lot of food science knowledge to help his health issues, mental health and disability.

    Hence my user name.

    That is another one to consult need to add . I forget, Chinese Medicine have look on line. Some Chinese medicine using certain techniques and used other things like herbs, spices can be useful.

    Usually be a shop or clinic in your area. We in the West still do not understand many ways of the Orient and the Far East. I have done research for my own issues and use certain herbs and spices.

    The choice and decision is yours but  would always consult GP.

    Please can I also add one other point again sorry if your taking any anti depressants or medications there are side effects could be that as well.

    I have new meds and am getting side effects but know how to cope.

    Please take care.

    @thespiceman








     





    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @CBJ, so sorry to hear you are experiencing this. It sounds extremely painful and frustrating. Please do continue to share your experiences and I hope others will be able to support you. Have you found anything that helps your pain levels?
    Community Partner
    Scope

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