General question please guys

Hi people, I would like to know your general opinions! I have been suffering with pains IB my joints for over 11 months, I have extreme fatigue and have had problems with my kidneys. I have recently come up in a rash, which is red and circular on my arms and torso, I'm currently under a rheumatologist and the renal team, I am waiting to see a dermatologist. My rheumatologist has diagnosed me with Fibromyalgia! I know the symptoms are simular, but I don't believe that's what I'm suffering with? What do I do?

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  • I have just seen a dermatolgist and have had a rash on my back which sounds similar to yours and she started me on hydroxy and will see me again in 8 weeks. I had a bioposy on the rash on my back about 8 years ago and this came back as borderline lupus, but I seemed to have slipped through the net. The consultant seemed to think that it was lupus and said that if the rash went that it was def lupus. My GP has now very kindley agreed to refer me to a rheumy,but because of the wait I am going private. I feel that I have waited too long now and my health has really gone downhill in the last 12 months. I have got 2 leaking heart valves, one of which has developed in the last 8 years and a scan to find out what was causing my stomach pains and weight loss showed cysts on my kidneys, which I was told are nothing to worry about! Well I'm worried.

  • Hi tjperfick, thank you for your message, sorry to hear your having a bad time, it is really hard to trust medical professions, I feel like banging my head against a brick wall some days, I just want answers. This is what my rash looks like

    google.co.uk/search?tbm=isc...

  • I don't see how, from your symptoms, you could have been diagnosed with fibromyalgia - do you have pain in all the 18 points that a diagnosis such as that require?? Too many doctors seem so willing to apply this diagnosis rather than an autoimmune disease one, I'm not sure why. The cynical in me tends to put it down to the fact that not much medication is needed to be prescribed for fibro, whilst autoimmune disease has several options. In today's times of cost cutting and budget constraints, I wouldn't be surprised if doctors are reluctant to dispense prescriptions for a chronic illness unless absolutely necessary, but again, this would be my cynical self, it may be that you really don't suffer from autoimmune disease (please don't think that I wish you to have an autoimmune disease just to prove my point!!).

    Going to a dermatologist is a good next step - ask him/her to take a skin biopsy for discoid lupus or lupus generally, that way if the results show something like that, your rheumie will have to revisit his diagnosis.

    Good luck.

  • Its a hard situation. You need access to a good GP. But if you give them grief there is always the danger you could be struck off or denied things in future.

    I tend to agree with much that purpletop has said. I am considering requesting a copy of my medical file from my GP. You cant effectively challenge anything unless you know what is there. I have copies of most of my stuff from most hospitals I have had dealings with.

    It seems that even when being treated these days you also need to apply some degree of self protection. God only knows what you are meant to do if you become too unwell to stand up for yourself.

    All part of the new improved health service I guess.

  • Hi just found out I have lupus SLE , I just pick up my meds. Meloxiican, Hydroxychloroquine, and I am so scared of this one 100 mg Gabapentin . Can anyone tell me something about theses medications thanks

  • No need to be scared hunny. I have been taking 400mg hydroxychlorequin daily for the last five years and been fine. It was first prescribed to me in attempt to control a very out of control Lupus Rash. That, along with a few other drugs, have successfully kept my lupus rash at bay. I am also prescribed gabapentin 1200mg daily. Initially I was prescribed Gabapentin for treating the pain I was experiencing from the lupus rash burning my skin. That was at a much lower dose though. Now, I am prescribed the 1200mg dose of Gabapentin for chronic pain experienced in all of my leg joints due to the bones dying.

    I've never been prescribed the other drug you mention, so cannot really pass comment. Keep us informed on how you get on

    Best Wishes,

    Clare xxx

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