I think i've been misdiagnosed. Advice needed please

Can anyone help or related. I've been diagnosed with M.E, Fibromyalgia and CFS. That might sound bad enough but looking through my medical history and illnesses i've had I think i've been misdiagnosed ? I've had arthritis, hepatitis a, periocarditis, during my second pregnant I had obstetric collastiss, I've had on and off reactions to the Sun especially when my arms and legs are covered in the sunshine I come out in a burning spotty rash, I've also had that on my face. My list of symptoms are endless with the M.E and Fibromyalgia and CFS. I can't find a reason for my hair loss & severe water retention, resulting in some day's I have to take 80 mg of frusomide, I also have constant sores in my mouth and nose my teeth have decayed. I'm in constant pain constantly tired and basically i've had enough. I've now stopped taking prescription medications as they don't help. Please can anyone relate.

6 Replies

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  • Agree. Ask to be re-referred to Rheumatology for second opinion. Print off the above and take with you x

  • I think you need a second opinion too. It certainly sounds like you have some Lupus symptoms, with the sun sensitivity being quite a big clue. Take someone with you to your next appointment for support.

    I have lupus and I seem to have also developed Fibro this year. I've found a new drug called LDN which works for me. My pain and fatigue have all improved since I started it 4 months ago. You can't get it on the NHS, it's private prescription only. I like it because I found all the conventional drugs for lupus too hardcore for me and I didn't react well. LDN is very low dose and works by stimulating the body's own healing mechanism. I can send you more info if you are interested. I also found that diet to be very important in managing my lupus, for me going gluten free and sugar free really seemed to help reduce inflammation.

    Take care and good luck x

  • Hi Dryad..what is LDN please?I too have Lupus.Thanks!dunk

  • Hi Jacqui. I was originally diagnosed with M.E./CFS but was eventually correctly diagnosed after a very difficult 8 years. Definitely push for an appointment with a rheumatologist, ideally one who has an interest in Lupus. Best wishes.

  • Hello.

    I 'think ?' ME is an old term for fibromyalgia. When i was diagnosed with fibromyalgia a GP gave me a book to read about ME. Now I've had fibromyalgia for many years I can see the book was really good helpfull & accurate. I think CFS can be 'old speak' for fibromyalgia too.

    Just to make things difficult, I think doctors are about to re-classify all this under a new term, 'central sensitisation/central sensitivity syndrome? To better reflect what's going on in the central nervous system?

    Get to a Dr. About the other stuff !

    Don't give up.

  • Actually I believe it's a term for Chronic Fatique Syndrome.

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