No diagnosis just sadness and frustration. new to this site

Hi I'm just wondering if anyone has any advice on what I should do next.

I have had pain in wrists and ankles on and off for 8 years. Saw rheumatologist who said it was non degenerative and I should swim. Eye pain and blurred visionwass investigated and had no cause. I have reactive lymph nodes which was diagnosed 5 years ago after a node was removed for biopsy. Bone spur and calcium removed from shoulder two years ago. Sun sensitivity and skin rashes v on chest constantly present, red on cheeks and nose comes and goes. Horrendous itchy painful rash triggered on holiday recently. Ankles are puffy and sore, hands tingle and get red and white blotches on palms. Reading glasses hurt my nose and pain radiates to cheek bone. Really sore tender areas on ribs. Burning aching and shooting pains through lower arms hands and feet. I'm not sleeping or eating. GP thought was connective tissue disorder but bloods were all clear. I have been off work for weeks because of pain tiredness and generally feeling awful, can't think properly. GP wanted me to see consultant while the symptoms are present so I paid for a private consultation today. He didn't listen to me he asked very few questions and dismissed it as being mainly a rash. He gave me a steroid injection and said I should feel better next week.

I feel so low right now because he obviously had no interest in hiw these symptoms are affecting me. He said it's probably not a ctd because the symptoms are not classic.

I managed to cook tea for me and the kids but had to have one of them cut my food up because it causes too much pain. I couldn't even hold the pen properly to fill in the form at the hospital.

I hope he's right and I feel better next week, but I'm still scared to go in the sun and am really want to understand why I feel so awful.

7 Replies

  • Find a new doctor ! It could be undifferentiated mixed connective tissue disease x

  • Hi bleach babe

    Sorry to read of the problems your having and difficulties with diagnosis. I just want to say that you don't have to have classic symptoms to be diagnosed with a CTD. Your symptoms do sound like one could be a possibility. The Rheumy you saw doesn't sound very good although he gave you a steroid injection. This is interesting because if your symptoms are inflammation based it should work and you'll feel a lot better . If it doesn't you may have fibromyalgia which is treated by painkillers but it's something you can be helped with. Does the Rheumy want to see you again?. Hang in there, stay out of sun and fingers crossed the injection helps, keep us posted X

  • Oh wow! If u have a teaching hospital I would try that. Terrible that u paid for Private Dr and got that attitude! I had non seroligic RA. So they could not tell from my bld tests what i had. Took 5 yrs of pain.

    I wish i had a better answer for you!


  • Thank you all. Just 'having a moan' helped a bit 😀 hopefully I'll feel better next week as the steroid works. I'm not seeing him again, I can't afford to be a private patient. I will see my GP, who is amazing, once I have a letter from the rheumatologist.

  • Doctor sounds crap.your symptoms are very similar too mine.I was diagnosed after lots of test as fibromyalgia and systemic lupus.lupus diagnosis took longer as some of my test came back normal.I have great gp and rhuemy is ok but between them they got me sorted but took 2 years or so.keep going to your doctor pushing for help you can't live like this.

  • if it was an injection was it a kenolouge injection if so it reboots your imune system bit like a computer and hope it comes back to normal worked for my cousin with fingers like sausages and bad back and knee pain hope it works for you

  • Hi Bleachbabe,

    I hope that the steroid injection helps you feel a bit better. I'd agree with other members of this community and suggest that perhaps you may be best seeing a different rheumatologist. It may be worth asking your GP to refer you to one who specialises in lupus. If you let me know whereabouts you live, I can provide you with more information about any who may be near to you.

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