Log in
Scleroderma & Raynaud's UK (SRUK)
8,010 members3,703 posts

Primary Raynauds not CREST

I’m really confused. The gp I spoke with a few weeks ago was great and advised bloods to check for crest. I’ve just seen a different gp for results and apparently everything is fine apart from low folate. Although she has put me on nifedipine stating she thinks I may have had Raynauds for a long time put symptoms have worsened lately.

I’m so fed up I feel awful all the time I’m so uncomfortable (joints etc). My reflux has calmed slightly since starting meds to reduce acid. Is it possible for bloods to be ok and still have something?

13 Replies
oldestnewest

Yes - a negative ANA doesn’t mean you don’t have scleroderma (or other autoimmune conditions) because when you have something like scleroderma you can have positive and negative results - I’m not sure why your GP is doing any testing surely you need to see a rheumatologist

4 likes
Reply

I had a positive ANA for scleroderma and later another bloods showed negative and my doctor said don’t think you’re cured - negative doesn’t mean you don’t have it,

3 likes
Reply

Thanks for the reply. I thought this may be the case as my dad had RA and my brother Sarcoidosis and I’m sure they both had negative results. I think I will push for a referral or maybe pay for one private appointment with the hope they can point me in the right direction. Surely if negative they shouldn’t tell me I have Raynauds and give me nifedipine? It feels a bit strange unless you don’t get antibodies with just Raynauds?. Thanks again 🙂

Reply

hi frozen...most people with raynauds have primary that is raynauds as a condition in its own right and dont have it secondary to another (mainly autoimmune) condition. you can ask gp for referral to rheumatologist for a full review and see how you get on.

3 likes
Reply

Thanks amd21 I do understand that it’s a condition on its own but I’m having a lot of issues that may be caused by something else. So do they just diagnose Raynauds purely by seeing you?

I had a sudden rise in bp 2 years ago followed by frozen shoulder. I have quite severe reflux issues and had endoscopy which shows I have a small duodenal hernia and shatski ring. I’m struggling with joints quite badly but more than anything I feel unable to do life on a daily basis even after a lot of sleep. I’m just fed up of feeling rubbish I first had MS mentioned when I was in my 20’s I’m now nearly 43 and fighting to find out what’s going on.

Reply

Also endescopy showed inflammation in all areas.

Reply

I understand your pain and frustration. I am sitting home with the flu for over two weeks. I don't have much motivation to heal. My hands, particularly one finger gets recurrent ulcers. I have been self-centered, thinking of all I wish I could do and cannot. There are so many people much worse off. I need help to be a better person. God bless you and heal you, in Jesus' name, amen.

1 like
Reply

Thank you I hope you feel better soon.

Reply

I WAS TOLD BY MY DOCTOR HAVE CREST NOW IT SEEMS I HAVE OSTEOARTHRITIS. BUT TH IMMUNE CLINIC BLOOD WORD SAYS CREST. I AM TAKING AMLODIPINE 10MG ONCE DAY I HAVE ETHROMYALGIA WHICH IS WORSE THAN RAYNAUD'S ANTI-INFLAMMATORIES DO NOT HELP. HYDROCODONE FOR THE PAIN. KEEP YOUR JOINTS WARM, WEAR GLOVES, MOVE TO WARM CLIMATE, OMEPRAZOLE IS WHAT I TAKE. TRY TALKING TO A DIET EXPERT ALSO. MEDITATE ID YOU CAN. HOPE THIS HELPS GET A SECOND AND THIRD OPINION. BE YOUR OWN ADVOCATE.

1 like
Reply

Thank you, I will try to get to the bottom of it 👍🏼

Reply

I DO NOT KNOW IF YOU DOCTOR SAID ANYTHING ABOUT HAND THERAPY ASK FOR AN IMMEIATE REFERAL. THEY HAVE WAYS TO HELP YOU COPE AT HOME WITH THIS ILLNES SUCH AS REACH STICKS, WORKING WITH DIFFERENT TEXTURES. ETC DESENSITIZING YOUR HANDS TO HOT WATER COLD WATER ECT. GET STARTED NOW THE SOONER YOU DO LESS DAMAGE. DO NOT GET CUT WORKING WITH FOO IT CAN CAUSE BAD INFECTIONS. IT WILL NOT HEAL. MEDITATION IS ABOUT TURNING DOWN DOWN THE DIAL TO PAIN. ASK ABOUT PAIN CLASSES AT YOUR HOSPITAL THEY CAN ALSO HELP AND COUNSELING. SUPPORT GROUPS, ART THERAPY, ANIMAL THERAPY. HUGS AND KISSES FOR A BETTER TOMORROW.

1 like
Reply

Hi, I have a similar problem to you. I’ve had raynauds all my life. I also have multiple joint/muscle aches, GI issues, fatigue, inability to absorb various vitamins and minerals, food intolerances, spontaneous bruising and mild unexplained chronic kidney disease as well as other symptoms. I’ve been to see a rheumatologist as I also had positive ANAs in a blood test. The rheumatologist however concluded that I have primary raynauds, no autoimmune disorders and everything else is incidental.

I would say if you are deficient in folic acid you can get some horrible symptoms, including aches and pains. I do find my symptoms are much worse when I’m deficient or low in folic acid, B12 or ferritin/iron.

You don’t give an indication of your age or sex. I’m 53 and a woman and have found that reduction of hormones at this age also contributes to feeling rubbish. I’ve just started a prescription of Bioidentical progesterone cream and am hoping that, along with regular vitamin supplements, helps.

Have you had other vitamin/minerals and hormones tested?

1 like
Reply

Nice to see others that are trying to find answers. I’m 43 female years of iron deficiency but had hysterectomy 3yrs ago followed by prolapse surgeries then Athriscopy on my shoulder. Feels never ending.

I hadn’t really considered autoimmune conditions but gp was the one that said everything seems connected. I’m going to have a little break and maybe book to see the same gp as he seemed more helpful.

Thank you

Reply

You may also like...