No further forward

Had a really bad visit to the rheumatologist. Have been told I probably don't have fibromyalgia and if I have RA it is very mild despite the fact my blood results say I do have it. Came out feeling I was being accused of being a fraud. Was so gobsmacked just came out without even asking if it wasn't these then what the hell was causing the pain, inability to move some days and the blood results. Feel like I was further back than three years ago when all this pain started. Now I understand why my mum would never go to the Doctor 😥

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  • Sorry to hear this, my mother would not go to the doctors either just struggled on. I want to know why and what is happening to me as my pain is getting so bad and spreading to many other part of my body and medication not working any more but after a visit to the doctors lasting 5 mins! hoping to get referred to a rheumatologist or the like as it's been 6 years since my original visit. So I do understand just how you feel it makes you feel like you are some kind of freud "perhaps I imagined I could not stand to brush my teeth this AM or the pain got so bad I had a little private cry today" There are others of us out here, I feel for you, take care

  • Hi hun I have been diagnosed with RA been on methotrexate and sulphasazine both been stopped due to liver and white blood cell count. I am trying a change of diet looked up leaky gut syndrome and the problems From it . .been off meds 2 weeks and still feel better than when on them.diet is mainly vegetation and gluten free look it up see if it helps goof luck hun xx

  • Hi Joy,

    You might be interested in my comments to Tracey63anne re diet etc.

    John

  • Hi Tracey,

    I'm not sure where to begin. I went on this forum last year to get some guidance on osteo arthritis in my right knee. Eventually, all my decisions were made for me because of acute and debilitating pain and I had a partial knee replacement. BUT - that's another story.

    I also have Atrial Fibrillation (AF) in other words a heart arrhythmia which, if untreated can result in a stroke. This story has a bit more relevance, and to cut the story short to what is relevant to you I am on medication now for life however I also found I can control this AF by diet. The diet had no particular name as it embraces a number of things. Firstly, when I suspected that my AF was being triggered by food ( I was experiencing massive bloating, intestinal gurgling, burping and diahorrea - not all at once but all these symptoms on their own and at random), my GP had some blood tests done to see if I had IBS and Coeliac Disease - these results came back all clear. At this point I learned about the vagal nerve, a nerve in the central nervous system that impacts on many parts of the body but in particular the heart and the digestive system. I figured I try calming the vagal nerve to fight the AF. I then went to a nutritionist who agreed that indeed the vagal nerve can be responsible for these things. She prescribed me a course of probiotics, she also suggested I go gluten and wheat free and also consider a seperate diet known as the FODMAPS DIET - suggest you google it). I found FODMAPS a bit severe but nevertheless I have picked bits and pieces from it. The idea of the probiotics is to return the gut flora to its correct level, i.e. to restore the correct balance between good and bad bacteria in the gut. I then went gluten free also wheat free, I then found oats were a problem for me. So I cut them out. I also found some green veggies were giving me a bad time, i.e., long green beans (runner beans) and peas. I then cut out all added sugar from my diet (there isn't much you can do about sugar added to a product when it is produced - except not eat it) - my list goes on and on. The result - my last recorded AF event was in April 2015 and before that I had reduced my AF events to 2 or 3 a year, and then only short sharp bursts that didn't even get me thinking of going to GP.

    One of the things now being recognised is that the digestive system is the body's 2nd brain and can be responsible for so much ill health.

    Best start by keeping a food diary of foods that upset you or bring about a change in your body - then eliminate them. If you see an improvement stay off them. Its no quick fix I have to say, can take months. It might even be a combination of foods that causes issues - just to confuse things. But the best start would be to see a Nutritionist, even if you have to pay yourself - I'm sure you'll get more help than a GP will be able to give.

    Good luck, hope this helps.

    John

  • Hi John just read your post. Most help full I agree I am trying this myself but find it very difficult actually finding anything to eat. Its very expensive for gluten free it seems healthy foods are most expensive . I've cut out dairy too but find myself living on juice blasts with a few nuts lol. Thanks Joy

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