I had Raynaud's for years but I did not know that what I was experiencing was unusual. I thought that is what everyone went through!

I have Mixed Connective Tissue Disease, Raynaud's, and Livedo Reticularis. I relate to the following:
"- Some sharp pains every now and then that seem sporadic and have been worse at some points in my life than others.
- Fatigue, dizziness, irregular periods, tired headaches." [Goodness yes on the symptoms!]

My pain radiates sharp and brief, or remains as a dull ache in either fingers, hands, wrists thigh bones or up my forearms. Mine can last from 1 3 hours.

I never understand the thigh bones and arms. Sometimes I think by rheumy thinks I am making it up! However, I also have very high blood pressure right now, which may cause this. Although I have had so many doctor visits and tests, I have to have a heart sonogram med and a stress test.

I've had joint pain as well but mostly wrists, elbows, shoulders, knees. YES, especially the shoulders and knees. The shoulders can be awful, but they have been pretty calm lately. They started me on Plaquenil, so maybe that is why.

I do hope everyone gets some relief for their pain. Sending good vibes!

Gabrielle

My ANA is speckled 1:160, I'm undiagnosed but I definitely have the Raynaud's symptoms. I also have Postural Orthostatic Tachycardia Syndrome. Something highly comorbid with that is something called Elher's-danlos syndrome, where you're hyper mobile, have Raynauds like symptoms, and a variety of other things depending on the type-which people often have frequent dislocations and breaks especially of the feet because theyre frequently flatfooted, also wrists, neck, back, head, shoulders are often a problem Also there's bleeding disorders with common symptoms. I ran my ANA 3 times, but they said sometimes with speckled (what you have if they believe it's raynaud's or lupus) but that you should test again in a few months because your ana could get raised by being sick, just a simple cold would throw the results off!.

I have had Reynauds for 5yrs now. I had 3 abdominal surgeries in 4yrs and was also a distance runner who had to abruptly go off exercise for a long period of time. I also had an anaphylactic reaction after root canal treatment, and the rubber remains in my tooth. I think all of these factors contributed to the diagnosis. I've had all the bloodwork and it's negative, as was the biopsy for Celiac Disease. I have symptoms of Sjogren's but (-) bloodwork. I have the hands and feet issue, with color change and numbness, the "lace-like" look to my lower extremities. Anxiety is one of my greatest concerns, I find myself in a phsical panic attack, where no emotional triggers are present. My Reynauds is worst for me during temperature changes, and any emotional stress, good and bad. I sweat profusely from hands, feet,, armpits, back and chest. I have no appetite and struggle to maintain weight during winter months. I need to keep my head, hands, n feet warm preventively, beforei get cold. I suspect I'll eventually get an autoi-immune disease diagnosis, just hasn't shown up in blood yet. I hope not. Good to read all of your experiences :)

Spirit13 -

OK. First, I'm sorry you going through this. It sucks. Second, it is common to have more than one auto-immune disease, and to collect more as you go. Third, many auto-immune diseases have overlapping symptoms and it can be almost impossible to unravel which is causing what. Fourth, the tests are not perfect or exact, and you can have things you tested negative for.

ANA is short for AntiNucleic Antigen - the test shows if your body is producing antigens against your own cells, which means your immune system is attacking your own healthy tissue. Your immune system does not understand the parameters of Sjgren's disease versus Raynaud's disease - those are definitions made up by doctors to try to define a set of symptoms. So, it makes sense that this stuff is often difficult to correctly diagnose and often difficult to treat, as well.

At 28, I got food poisoning and after that I started going downhill. I dropped out of grad school and spent years going to doctors, trying to figure out why I felt so terrible. Every doctor said something different. I had a positive ANA, so some doctors were certain it was lupus. Others said fibromyalgia, mixed-connective tissue disease, chronic fatigue, and I forget what else. I went to all the most highly recommended rheumatologists in several major cities. (Most doctors on that level do not even accept insurance, by the way.)

Almost 25 years later, I have a diagnosis that finally makes sense. My new rheumatologist went to med school in Canada, interned at Harvard. He approached things differently than any of my other doctors. He doesn't just rely on lab test results, he listens to every crazy little symptom as if it is an important clue. I was always told, since high school, my back pain was from mild scoliosis. This docyor put all my symptoms together and diagnosed spondyloarthropathy - which is a group of auto-immune diseases that affect the spine and other organs (my symptoms fall between more specific classifications, but ruled out ankylosing spondylosis.) I also have Hashimoto's thyroiditis, Sjgren's, Raynaud's, and a few other minor glitches. His diagnoses explained all my symptoms perfectly. There is a genetic marker test for spondyloarthropathy - HLAB27 - which by the way, I tested negative for. You cannot just go only on tests.

I am on immunosuppressants, disease modifiers, pain meds, and a bunch of other meds. Enbril and Humera did nothing. Methotrexate, Plaquanil, a wee bit of prednisone (hate the stuff) - not much happened. Finally, two months on Simponi, and I think things are getting better. By better, I mean I actually drove the car for the first time in almost a year. I went somewhere other than a doctor's office, school performance or teacher conference.

When I got sick I had been a vegetarian for about ten years, I was an athlete, and super organic crunchy-granola-type. Basically, I was the last person you would think of getting a chronic illness. In addition to traditional Western medicine, I did try every alternative modality you ever heard of and some maybe you haven't: acupuncture, reiki, myofascial release, chiropractors, osteopaths, Chinese herbs, biorhythms, a solid week of cranial sacral therapy in Florida with the guy who invented it - lots more stuff I regret wasting money and time on. Massage is the only thing I can honestly endorse - not as a cure, but it always feels good.

Be prepared to be your own advocate. You may have to fight hard to get the right diagnosis and treatment. Only you know if your diagnosis feels right. Keep yourself informed and don't stay with a doctor if he is not listening and responding to all your issues. Keeping your own copy of your records and a journal is a really great idea. There's an app for that! Capzule PHR is the one we use.

As for your symptoms, fatigue, dizziness, etc. - have you had your thyroid checked? If your TSH is "normal," but above 2, read "The Thyroid Solution" by Ridha Arem (spelling?) and then find an endocrinologist who will treat you to the low end of the normal range. Oh my, another test that is not perfect - imagine a hormone test that has the same normal range for both men and women! Hypothyroidism can caused by auto-immune disease.

Sorry to go on and on. I am really hyped up today and so I just kept on writing... My daughter (adopted, and thankfully free from my genetic cesspool) got a scoliosis brace yesterday and I had pumped myself up to fight through the worst day of my life. Everything turned out great - I am still amazed. Doing research for her is why I joined this site, and I only saw your post by accident.

Good luck. Try not to let it stress you out. And I am happy to answer if you have any questions. I have spent half my life trying to understand all this, and if any of it helps you out, that would be cool.

I had been Dx with Raynauds about 5 yrs ago and given a blood pressure med to dialate my blood vessels, it works great after one increase in dose i have very few problems with this, but about 2 yrs ago was Dx with RA , I am still trying to get this monster under control. It appears there are many diesase out there that are related and the monster grows. i hope you find the right Dx for all your problems soon and then start on your road to a more pain free life.

I am new here:)
I was diagnosed with RD two days ago. I have suspected it for a while. My nails have deep almost gash like lines to them and when it is cold outside or I am holding something cold my hands hurt and feel like pins and needles. I don't always have the color change but my feet are the same way. I am a photographer so when my hands stop working and I have to run and warm them up, it is not good. My doctors thought I had Bechets Disease but they are not so sure so they are running yet anaother huge panel of tests.

My mom had Reynauds along with Scleroderma and my brother has ulcerative colitis and Reynauds so if things dont show up now something will at some point for sure.

Do any of these symptoms ring a bell with anyone who has something besides RD?

-Reynauds
-Groups of ulcers that are in the mouth and in vaginal area
they happen almost all the time now or every three weeks.
-Flux weight gain. I can gain 10 lbs of water weight once a flare hits
-I lost 67 lbs and it seemed to get worse not better. Dropped from 190-122.
-Fatigue
-Joint and bone pain during outbreaks
-Migraine