Is it lupus😢

Is it lupus😢

Hi Iv been suffering fibromyalgia for 9 years , been on diamorphine and still on morphine now , but it's stopp working so getting loads of pain and swelling, , my fingers have been swollen for years now but now I can feel pain in them why swollen, the bones hurts , my ankle that I damaged the tissue is hurting , it's permanent swollen , I have TMj, very dry eyes, especially in the morning , my bad kidney hurts every day and now my liver is now showing up that I drink and I don't drink!!!!! , I feel as if I'm running a slight tempreture at night, evry bone hurts , I have just been told I have arthritis of the lower back bone and spine, I have thinning bones due to having an hysterectomy at 21 I'm 42 now , and going for my bone scan, my last blood test showed up inflammatory markers slightly up, what I know don't happen with FM, I .took this photo to show people my new hair cut I had from home coz I'm house bound now and look what showed up a butterfly rash , what I see acouple of years ago and thought nothing of it , please help xx

6 Replies

  • Hi Daisythower,  (Most excellent name)

    If you haven't already, I think you should re-post this at the Lupus UK  site that's part of the HealthUnlocked thingi.   Its an excellent busy site. You will be sure to get a propper response. 

    I have SLE Lupus & Sjogrens - (and was tagged with Fibromyalgia once)   

    Just my jaded opinion, but 'MOST' of those symptoms do not sound like Fibromyalgia to me.    This isn't to say you have Lupus,  but I think this possibility - along with Rheumatoid Arthritis along other possibilities -  needs to be more seriously investigated and investigated right now !   Don't muck about, as you may need to get though a lot of dud Doctors before you can get a clear idea of whats going on. 

    If you can, get yourself a new Rheumatologist with at least a quarter of a brain,  or much better still,  a good General Specialist with as many degrees as possible - or even a Lupus Specialist if you can gain access to one.  They may not diagnose Lupus, but they would be better equipped to analyze & deal with your symptoms.

    (just my opinion)  But Rheumatologists have been led astray by the Fibromyalgia phenomena at the expense of looking deeper into what is causing peoples symptoms. Sometimes they are virtually blind to the reality of the patient in front of them as fibro has become a bit of a trendy fixation for them.

    I'm not saying Fibromyalgia isn't real or part of your medical profile,  but as you're having some obvious non - fibro symptoms,  try to put aside - or even openly reject the concept that you have Fibromyalgia while you're looking for a proper answer to whats going on.   A fibro diagnosis just muddies the waters and will just get in the way of the extra diagnosis you need.  

    Please quickly move on from any Doctor who insists its just Fibromyalgia.   There are a lot of imbeciles with medical degrees out there.  

    You need to be assertive on this one.  Good Luck !

    ps.  feel free to contact me if you like - as I have some experience with this kind of scenario.




  • Hi Daisythrower, 

    Try  re-posting   ' Does this really sound like Fibromyalgia to you ?!? '  Or something else broached in more general (melodramatic?) terms that can lead to more of an open discussion. People might back off if they think you're asking them for a specific diagnosis.  

    Good Luck. x

  • Sjogrens leaches all the vitamins out of your body on my sjogrens website I have a series of 12 videos on what I do to cope with sjogrens these have worked for me

  • Hi Daisy,

    The reason the Morphine is no longer working for you is that you are immune due to being on it so long. As for your liver function tests being high have you been tested for Hep C?

  • Hi, yea Iv been tested for everything I think even HIV , what I wasn't happy about and have a complaint on going with NHS England, it with a dr who Iv never met and it was my first time at this practice coz I was on a high amount of morphine 440mgs! She automatically thought I was a drug user, she also ask if I had any tattoos and had I used any drugs introveanously , she wasn't nice at all towards me, coz I had a scab on my face for having shingles for the last 10, months, I had shingles since the age 19, I'm 43 now, I'm just on a 50micrograms patch now and in agony!! I know I became to immune but I realised now I wasn't in that much pain as I'm in now, my arms and hands are jerking, I have chronic chronic!! Fatigue, bone pain , having a blood test tomorrow to see if I have anything inflamed, I just feel horrible, depressed, I

    Know I have severe ostioperosis from having a hysterectomy at 21 and not been cared for by Drs , I never knew I could get this ill with my bones!

    I'm just a wreck and spend most my days in bed , haven't been out for 18 months xx

  • I'm so sorry to hear of your illness. I would take the advice of starting from diagnostic "scratch". It may be that you have another disease altogether.

    If you've had shingles chronically for years, I'm surprised that it didn't set off warning bells with your doctor.

    It may be that you need a new doctor. Are you able to choose your doctor through the NHS program?

    Compile a dossier of all of your questions and symptoms including the photo of your facial rash. Don't accept sub-par medical care.

    it can't be nice that you've been housebound for so long. Best of wishes with everything. 😊

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