New Here

HI, I have suffered from Lupus, Fibromyalgia, Raynaud's Syndrome, RA and several other conditions for over 10 yrs. It took about 7 yrs to get a dx on Fibromyalgia and 10 yrs for SLE Lupus with Raynaud's. It seems like the doctors have very little knowledge on all of these conditions (even the specialists) and I am so grateful to find a group like this. I have so many questions that have been unanswered. I just found this group by googling some symptoms that I wanted to know about. I am looking forward to sharing information and learning from all of you.

4 Replies

oldestnewest
  • Hi there, I'm glad you have found this group. I also have fibromyalgia and Reynauds plus an auto immune liver disease called AIH. It also took a long time to get a diagnosis. Around 10 terrible years. I think it was because I was so young and didn't particularly look ill until I lost a lot of weight. Still, it was terrible and I felt doctors didn't take me seriously. It was put down to depression, stress etc.

    It was such a relief to finally get answers.

    I really feel for people who struggle with these illnesses without any answers. I hope this changes as its such a lonely place to be in.

    I hope you find comfort with this group. I know I have. It's lovely to be among people who understand. All the best

    Jacqueline

  • Hi sr1986,

    Welcome to the forum. I'm sure that you will find some great support and answers to many of your questions (and maybe some that you haven't even considered). We look forward to hearing more from you.

    If you are looking for more information about lupus, we have a range of publications which are free to view and download on our website at lupusuk.org.uk/publications/

  • Hello sr1986, welcome to the forum. I've benefited enormously by interacting here, and I hope you will to :)

  • I have already learned a great deal regarding some issues that my Dr was not able to give answers to. For a really long time I have had problems with my ears and sinuses but when seeing a specialist for this and being tested I was told that I was perfectly fine. My ears itch way deep inside and feel sore and sometimes it feels like there is water or liquid in my ears but I can't get it out. I have even had all the symptoms of a sinus infection and when I took the x-ray was told they were normal. My rhuematologist never heard of such things being related to Lupus and is the one that sent me to the ENT. Reading some of the posts on here I see that I am not the only one having these issues with my ears. I also get sores in my mouth and nose. That the dr was aware of. My head gets really itchy before my hair falls out too and the dermatologist just scoffed at me. ??? I am beside myself that the drs are not willing to actually listen and learn from there patients, and I have learned and felt comforted by complete NON doctor strangers. Thank you all for sharing. For years the drs said I was under too much stress and depressed, finally I told them that you would be depressed too if you were in this much pain every day and no one is believing you. I am on plaquenil now and feel so much better, but the mouth and nose sores seem to be worse. Is there any way I can avoid them?? Sorry, I kinda went on a rant. xo

You may also like...