Raynauds and investigations

Hi everyone. New to this.. I've had a diagnosis of Raynauds for over 30 years (52 now) and although pretty severe- have coped well and kept smiling. However recently in hospital with severe kidney infection and now have inflammatory bowel disease and some random joint swelling that comes up, resolves and then moves! Doc at hospital has ordered ANA test and I'm waiting the result. Had one about 10 years ago - negative then. Apparently I have to have an ECHO too, as chest X-ray may indicate pulmonary prominence. I'm now terrified and struggling to wait on tests and rests. Has anyone been through this??

Best wishes and good health to all


10 Replies

  • I too had raynaud's since my 20's as well as fibromyalgia.also had constant bouts of pneumonia every year( i developed what a world specialist called Hypogammaglobulinemia). Basically i needed an infusion monthly to keep my low immune system up.I also have IBS like you. I always had negative ana's. However, in 2007 age of 48 The visible arthritic changes began , eyes swelling, your toes felt like they were crunching in a shoe, so much pain in your feet it could make you feel nauseated ,(that was due to worsening of the raynaud's and blood flow), I had numbness and tightness in my back, tiny red spots began to appear called petechiae on my arms, my legs, some on my torso(that turned out to be vasculitis).I went to an eye doctor referred me to corneal specialist, I had a + schirmer's test and diagnosis of sjogren's disease.It is more than dry eye, it has caused near blindness in my right eye, the prednisone drops to stop the inflammation caused cataracts, i thought i would not get until i was 80. I had a wonderful internal medicine doctor diagnose me with systemic sclerosis which is a form of scleroderma. My worst nightmare. it is called the crest syndrome, because the auto immune diseases such as raynaud's, fibromyalgia , sjogren's etc.. joined together and form this. There is no cure. It is progressive, they can treat the symptoms to the best of their ability. up to 70% of people with this all have negative ANA's and negative scleroderma centromere testing. Doctors must go by the symptoms and what they see, if they are smart. Since mine is systemic it wreaked havoc on my lungs, they are scarred, my vascular system is really frail, the disease causes the scarring so it is hard to draw blood, or put in an IV, I have no access.I also now have white spots on my skin called calcinosis, they show even if you try to hide them with some sun, which is not recommended but I want it not visible. Then in 2012 I had congestive heart failure, I went from 130 pounds to 94 pounds. I lost all of my muscle and have not been able to get it back, no matter how I try. I am trapped in a body I do not recognize now. I was always active, dancer, traveler, career, now i look similar to someone 85 in my arms and legs as I am nothing but bone with no fat layer for warmth, and no muscle. You can tell subtle changes to the face, you take on a skeleton look. I take numerous medications daily for circulation, my lungs, my heart, the gastric reflux that developed,anxiety, depression.Then you have your inpatient stays for infections, or heart issues. The doctor who is a critical care doc took over for mine when he retired, he agreed with the diagnoses. I went to 3 Rheumatologists who are suppose to deal with this, and i was told you don't have that without ever touching me or other information(i left), another told me you look great to me( as they look at your face, not listening), the other wants to just wait and see. if i listened to any of them i would not be writing this now. It is like cancer in a way just because you might look good to someone, or it is not visible like a huge deformity, you cannot possibly be sick. Make sure you have a good doc. do not settle when you know something is very wrong. The scleroderma foundation(on the internet) has people who specialize in this at various clinics. Just because it is negative listen to your own body is the best advice i can give you. I was a nurse as well. I was denied my disability after fighting for it for 7 years, they were hoping i would die first. (in Missouri not good government).They based it on negative ana's, not the 4 specialists who treated me for 7 years. Stress is not a good thing when you have this either is causes it to flare worse than normal, then you get prednisone.I never took more than a tylenol, now i feel like a pharmacy. You have to find humor, keep fighting( i have 3 kids, 2 are still at home). And most of all keep your body warm,gloves on your hands even to get into the freezer, wool socks(which i hate), I use a heating blanket year round as it helps. Find time for yourself to relax. And most of all keep your faith. At 20 something raynaud's did not mean much, disco's, fun great life, If I had only known. i did not write this to worry you but to help you in case you notice any of this yourself. I hope you get better.

  • Hi there and thanks so much for your reply and advice. So sorry to hear of all your health challenges- you have great spirit. I'm in Scotland and there are 2 specialist centres that I would be referred to if required. Up until recently though I haven't given any of this auto immune stuff a thought. Just coped with the Raynauds and IBS, but now have the diagnosis of Ulcerative Colitis. That is bothering me more than anything just now but I'm having treatment and have a specialist. Joints are ok again now- very bizarre. Possible fibromyalgia I guess for that one. Will see what the ANA says and the echo when I get the date. That's the one that scares me..

    I am a nurse too but now work in social services.

    Take care of yourself


  • By a coincidence I had an echocardiograph this morning, as a heart murmur was found. I was really uptight, but they were so nice, and the procedure was completely noninvasive. It was a bit sore where they rolled the scanner.... just the pressure they need. They told me what they could see, and I was so relieved when they told me there was no serious damage, it was treatable!

    These procedures are daunting, but at least they can quickly find out if anything is wrong, and make sure you get the right treatment. Good luck, hope all goes well for you. M x

  • Thanks for those words of encouragement. Glad you had good news too! I'm afraid of what they may find to be honest.. Prior to my recent hospital stay for pylonephritis none of this was even in my mind. I've just smiled and coped with my Raynauds after some medication etc that didn't really help. Ulcerative colitis is troubling me at present but I'm being treated. It's the pulmonary prominence that the consultant thought maybe there on my chest X-ray and therefore wants to screen for scleroderma and pulmonary hypertension to be on the safe side. Just waiting on the ANA blood test result and date for the scan. Hoping I don't wait too long.

    Thanks again for your help- positive encouragement means a lot. Jen x

  • I too was diagnosed with Raynauds in my early twenties and I'm now 51... Diagnosed six month ago with Sarcoidosis which is an auto immune disease which at present is affecting my lymph nodes leading to my lungs, causing lumps and bumps to form on various bones around my body, severe fatigue, brain fog, reduced mobility and ohhh the aches and pains are horrid. My Raynauds has been a lot worse since being diagnosed with the Sarcoidosis.

    It is no fun when our bodies attack themselves but at least this site helps to unite fellow sufferers.

    Stay warm everyone and be kind to yourselves xx

  • Hi there and nice to hear from you. So many people with these horrid auto immune diseases that are coping well - it is encouraging. I have diagnosis of Raynauds and Ulcerative Colitis and just worried they find more.. Meantime I'm generally well and grateful for that. Hope you keep well and the winter isn't too cold!! Jen xx

  • I've had raynauds for fifteen years, was diagnosed with lupus two years ago. I have sle and discoid lupus. Have your doctor to do an ANA test to see if you have lupus.


  • Hi Jane

    Yes I have just had an ANA test done and waiting on result ... Also waiting on an ECHO scan. Will see what the results are- very anxious meantime.

    Hope you are keeping well


  • Hope you have great results.


  • Thanks Jane. I'm hoping so too

    Keep well

    Jen x

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