Hi... New here and hoping to find others with similar stories to learn from. ANA test results are 1:2560 anti-centromere (not sure what that means). SSA Ab is at the high end of normal range, RNP Ab just over normal range and Centromere Ab os double the normal range. I've been diagnoses with hashimotos thyroiditis and fibromyalgia. Nothing seems to help. For years I have been suffering from terrible fatigue and joint and muscle pain. I've been to chiropractors, physical therapy, massage therapy and nothing helps. Just referred to a neurologist. Does anyone have a similar case and some words of wisdom? Don't know what to ask the Dr but am desperate to reclaim my life.
My advise would be to get to a rheumatologist, to see if there is something going on other than Hashi's, with that high of a screening test, especially with the anti-centromere pattern. I too have Hashi's and that pattern, as well the fatigue , etc. No diagnosis of fibro, though, but I was diagnosed with what used to be called CREST jeepers, 10 years ago or so. Do you have any other symptoms, such as Raynaud's or Gerd or a weird tanning pattern to your skin or red dots, dry mouth or eyes? Are you on treatment for your Hashi's? - Of course, I'm not a Dr, just a patient, but I would seek out a Rheumatologist, with a list of my symptoms. If you do have another AI disease happening, there are treatments available that can help with the fatigue and joint and muscle pain.And know also that each person presents with their own unique set of symptoms, not just the "classic" ones, you know, like the lupus butterfly rash. Wishing you the best! Keep us updated!
Last edited by luca689; 03-26-2012 at 10:54 AM.
Reason: forgot something
I'm sorry for what you've been going through! And it sounds like it's been going on for a long time! You have a high titer ANA (higher even than me), and from what I've read, anticentromere antibodies tend to correlate with high ANA titers. Anticentromere antibodies are rare outside of CREST/limited cutaneous systemic sclerosis, but can be seen in some other conditions (including Sjogren's and primary biliary cirrhosis, and probably some others too).
RNP is typically associated with mixed connective tissue dz or lupus, and SSA typically with Sjogren's. However, if your only symptoms are fatigue and pain, you may be diagnosed with an overlap syndrome or undifferentiated connective tissue disease. You actually sound a lot like me - I have ANA 1:1280 (which is really high), anticentromere antibodies, and Hashimoto's thyroiditis! But minimal symptoms. And hopefully will never develop any
I hope you're seeing a rheumatologist - if you're not, you NEED to establish with one. Anyone with an ANA that high and with anticentromere antibodies needs to be followed closely. Good luck, and I hope you feel better!!
Right now... I have all but given up. My Last appt with the Endo for Hashimotos said to consider seeing a psychiatrist and a my last Rhuem appt she didn't even schedule a follow visit for the future... She told me to watch for a few symptoms (CREST I believe) and then was done with me. I've quit taking the Lyrica the Rhuem prescribed because it just didn't work for me. I have gotten the same story from both Endo and Rhuem.... There's nothing we can do for you... And you just have to live with it. I feel very defeated right now. But I know so many on these boards have gone through something similar.
I have no answers for you. My ANA is 1:1280, all numbers ok but my thyroid. I am being treated for that. Fatigue is really bad and muscle pain.. all over pain, but had stabing calf pain for 4 1/2 months. Got relief for one day then my shoulder, elbow and wrist is the extreme pain areas now. Did I say extreme, cutting it off would be better at this point. I also had bad cramping throughout my body. I am on Neorton. It helps some. I couldnt take lyrcia, made my heart pound and blood pressure to get really high. The Synthoid did the same thing, on Armour now. Not sure what my test are, they will come back tomorrow. I don't think I helped you, but am hopeful that some one chimes in with some good info.
Have you been scheduled for another blood test to see if your ANA is still high. Did your rheumatologist give you an explanation as to why it might be high? Do you have Raynaud's BTW? I think that once you are given a fibro diagnosis, that's pretty much it, as far as many Dr's taking a second look at things, because although it my be chronic, it is not fatal. But fibro doesn't cause a high ANA and many Autoimmune conditions do cause fatigue and joint pain. I might, were I you, seriously question the fibro diagnosis and get better answers. What sort of symptoms did she tell you to watch for? The ones I mentioned or different ones? Did you have your SED rate tested? I think I might even see if I could see another rheumy for a second opinion.
I have sent the Rheumy yet. My appointment is in Sept. I have been waiting patiently. The primary care doctor I have seen has reported me with "myalgia" and feels that I have some type of connect tissue disease. I have had the ANA test done 3 times since February and the first was 1:320, and two at 1:1280. I had ENA, DSDNA, CS Complement, AST, BUN,Creatinine, CCP IgG/lga were all negative or within range, sed rate was 13, ANA pattern diffused speckled, Rheumatoid factor 11, CRP .4 they were on the high side, but still in range. oh and negative for Lyme.
All that blood work will be re-tested prior to my Sept. 25th appointment.
Joint pain & weakness especially in the morning
I can no longer sleep on the right side of my body because of shoulder and elbow pain.
Extreme pain all day long in shoulder and elbow (rotary cuff pain, tennis elbow pain, and carpet tunnel) all started out of the blue.
I wake up in the middle of the night from hand , arm and foot tingling and numbness
1st step out of bed, pain in my feet and calves
My calves feel like an ice pick is stabbing them when I take a step.
When I go walking my feet/calves throb, the pain goes all the way up to my sciatic nerve. In addition, the front part of my leg (Shin) aches.
I get sharp pains shooting down my arm to my fingers.
Hands are stiff and ache and I have no hand strength. Cant open jars or anything like that.
I am very tired all the time, extremely fatigued. I have to force myself to get up.
I get Charlie horse type cramps that can last between 1 minute to 5 minutes. Very severe. The cramps will be in my calves, feet, lower back, under my breast. After I have one of these episodes, pain remains from the cramping of the muscle for several days. I will have another cramp the same day or next so the pain is constant.
I have tender spots all through out my body. Like I am bruised.
Dry skin and scalp (psoriasis)
I have heartburn daily, take daily tablet for that.
After my gallbladder removal 9/2010, I have bile dumping syndrome. By avoiding some foods, I have it some what under control. At the height of the problem, 15 acid bowel movements a day. Now, it is just 5 or 6 a day, a couple times a week.
TK, You know, I was thinking back to when I was diagnosed during a really bad flare and I was having one heck of a hard time with tendonitis. Many of your symptoms sound like that. And if you have psoriasis, has psoriatic arthritis been considered? I know about the long wait to see a rheumatologist. I think I had to wait something like 6 months all told, to see one.I hope you are doing better and wish the best for you and Lettie and everyone else in this boat.
The Following User Says Thank You to luca689 For This Useful Post: