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Sufferer of Lupus, Sjogrens and fibromyalgia

Posted , 3 users are following.

valerie59351
valerie59351

Hi just wondered if anyone has ever had the symptoms I have had recently.  It usually happens at night either as I am going to bed or it wakes me in the early hours.  My ribcage seems to lock up with excrutiating pain, breathing is difficult and I cannot seem to release the pain.  The paramedics administer morphine and I am admitted to hospital for an overnight stay.  In the morning I wake up with no symptoms whatsoever.

There seems to be no connected reasons why this has happened 4 times in the last 18 months, i.e. similar food in meals, alcohol or activity etc.,

If anyone has had something similar or knows what this might be I would be really grateful for some feedback.

Thanks

Val

1 like, 14 replies

14 Replies

  • valerie76537
    valerie76537 valerie59351

    Posted

    Hello val - I'm sorry you have had such pain and your description matches, i think, what i have experienced three times in the last few months; on first occasion i was in sitting position during the day with ribcage suddenly feeling unmovable. excrutiatingly painful going round to my back..stopping me from expanding to breath.; i just tried to stand to ring for emergency help...didnt get that far as excrutiating pain and I had to snatch tiny breaths/// just believed it couldnt last...guessed then it might have been indigestion...it did wear off after about 30 mins but has happened twice since, once when i was "propped up" in bed and again when sitting down... i dread it happening again and yet stupidly didnt mention it to my rheumy on last visit... like for you there are so many horrid symptoms to report in short consultation time..with MCTD/lupus, sjogrens, reynauds..GERD, arthralgias.lumbar spine stenosis.I am so sorry not to be able to give you any answers but hope someone else can.
  • pam_87693
    pam_87693 valerie59351

    Posted

    Both Valerie's yes it certainly sounds like GERD associated with SS or SLE as both affect the entire gastric system. The real problem I find with this particular group of autoimmune diseases is the overlaps. We all get things cause my very different triggers. It might me anninfection, an operation, stress trauma, childbirth. The majority who have these problems are women. Usually as they approach the change when our hormones are dropping off. I personally really didn't notice the menopause I had so many things on my mind. I don't know where you live but if it's the UK I suggest you see your GP. Many find Ranetadine good. I am on esomemrazone and Sulfasalazine due to my life long history of mouth ulcers. I have been diagnosed the IBD, as Sulfasalazine has stopped all problems. Obviously you may need to have investigations to prove your problems. However I do know how lowering chronic indigestion is. 
    • valerie59351
      valerie59351 pam_87693

      Posted

      Hi Pam, thanks for your message.  I don't actually suffer from reflux at all or indigestion to any great degree.  My pain is sudden, extreme and in my ribcage and around my body.  It has happened 4 times in the past 18 months and usually happens as I am going to bed or wakes me in the middle of the night.  The only thing that relieves it is morphine and because of the symptoms mimicing a heart attack, I am always taken into hospital and tested for heart disfunction.  The tests are always negative and once the morphine has worked and I have slept the symptoms go away completely.

      The first time it happened it was suggested that it is pleural in some way and I am beginning to think that too.  I have done a lot of research on it over the past couple of days and will go to my GP to request further investigation into my lungs, my pancreas and the possibility of peritonitis. 

      I am really stabbing in the dark and being an amateur doctor but it has been going on too long and is too upsetting and painful to accept the general description of fibromyalgia as the possible cause.

      Thanks for your message and I hope you are okay.

      Best wishes

      Valerie

  • samwich
    samwich valerie59351

    Posted

    Hi Val:

    The pain you describe sounds like the pain I experienced before being rushed into hospital and diagnosed with type 2 pnuemonia a few years ago.  It felt like a rib had punctured my lung!  I was in hospital for a week on strong anti-biotics.  I am now susceptible to lung problems and have SLE and Fibromyalgia and Reynauds.  I don't know if any of this relates to your problem but I hope it helps even to eliminate possibilities.  (ps.I am a smoker and the lung problems are no surprise unfortunately; are you a smoker?)

    Best Wishes

    Sam.

    • valerie59351
      valerie59351 samwich

      Posted

      Hi thanks for your message. I am not a smoker but do think that my problem is lung related. I am going to propose a few investigations to my GP.

      I am grateful for your help.

      With best wishes

      Val

  • pam_87693
    pam_87693 valerie59351

    Posted

    Hi Val look up Costocondritis?
    • valerie59351
      valerie59351 pam_87693

      Posted

      Hi Pam thanks for your message. I have looked this up and it is a possibility. There are now a number of areas that I will propose to my GP for further investigation.

      Thank you for the thought.

      Best wishes

      Val

  • susan33651
    susan33651 valerie59351

    Posted

    Oh, this is just too freaky! I experienced something similar last night!! Never had it before, but I think it must have been related to food ingestion because as soon as I sat up and belched several times over a period of about 20 minutes the discomfort and pain went. I've had other episodes of abdominal bloating and indiestion/heartburn before so I suppose it must be connected. Gastric symptoms are related to Scleroderma and my Rheumatologist says I have features of this autoimmune disease in addition to those of Lupus, still have diagnosis of UCTD though.

    I have read that pleuritic pain is a symptom of lung issues within Lupus/autoimmune diseases. So you should definitely seek further tests from GP.

    Best wishes to all.

    • valerie59351
      valerie59351 susan33651

      Posted

      Hi unfortunately my pain is not gastric - I do not have abdominal pain, bloating or wind. It is like a band has been fastened around my rib cage and I can breathe. The only thing that relieves it is morphine. I am thinking that is is a pleural problem and I am hoping the GP will refer me to a specialist.

      Thanks for your message and I hope your symptoms become better.

      Best wishes

    • valerie76537
      valerie76537 valerie59351

      Posted

      hello valerie - it is good you have received such helpful suggestions from the forum concerningyour rib cage problem which as previously mentioned sounds very similar to my own experience and which I too am pretty certain is not linked to indigestion, (although I had wondered the first time it happened then discounted) this rib pain being in lower ribs and spreading round to my back making breathing very painful, shallow and "snatched" until the pain eventually slowly fades.Good luck with your GP visit and hope the pleurific suggestion is looked into for you to have a clear answer please let me know how you get on. Take care - best of wishes to you. ..the other Valerie!
    • pam_87693
      pam_87693 susan33651

      Posted

      Yes that all sounds so familiar! Have you 1) been tested for Coeliac I am negative. 2) my life long history of mouth ulcers, IBS, acid reflux, bowel hurry has stopped. My consultant put me on Sulfasalazine. That figures as my mother with Psoriasis had colitis.  
    • valerie59351
      valerie59351 valerie76537

      Posted

      Hi Valerie thanks for your message and support. It can be lonely battling with pain. I will let you know how I get on with the GP.

      Best wishes

      Valerie

    • valerie59351
      valerie59351 pam_87693

      Posted

      Hi Pam thanks for your message. I haven't been tested for Coeliac. I Am gluten intolerant but have cut out most things that cause a problem. I am considering going to a homeopath as I feel they will be more holistic.

      I hope you are having a good day.

      Best wishes

      Valerie

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