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Posted By : BodyBizzare - 5/25/2017 8:33 PM
I'm reaching out for support as I really feel I don't know where to turn. I've been officially diagnosed with fibro and Gilbert syndrome. I've been to rheumy x2 and had 2 borderline positive ANA 1:80, the last one they didn't test for specific antibodies but I had low positive double stranded DNA and negative Ssa and Ssb previously. But as of late my symptoms are this- overwhelming fatigue, joint and muscle pain, GERD with difficulty swallowing solids lately, a tingling/buzzing feeling mainly in legs and feet, dry eyes ( eye doc did test and found dry irritated cornea) dry mouth but no salivary gland swelling, dry skin. My eyes suddenly felt gritty one weekend over a year ago and now it's all the time. Even my vision gets blurry with it. Bouts of sinusitis and vertigo. All of this in the past year. I even saw a neuro who did EMG and NcV test all negative which of course is good, but then he said " I hope that is a relief". I said " of course" I really don't want to be sick, I want to be out living my life, but whatever this is has robbed me of the quality of my life. It's getting worse and I have less time where I feel good. just wondering if anyone else had trouble getting diagnosis or had only low positive AnA?? Thank you for reading.
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Posted By : Sherrine - 5/26/2017 11:10 AM
Hi, BodyBizzare, and welcome! First of all, a positive ANA may mean nothing at all. It's one of many tests to see if you have an autoimmune problem going on. Fibro isn't considered an autoimmune problem. Here is a good link all about the ANA test by the Mayo Clinic.

www.mayoclinic.org/tests-procedures/ana-test/basics/definition/prc-20014566

Your dry eye and dry mouth could possibly be caused by Sjogren's Syndrome. We have several members who do have this. I'm not a doctor but am guessing here. Here is another link from the Mayo Clinic that explains this syndrome. See if it sounds like what you are going through.

www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275

With fibro you will have pain in all four quadrants of the body. The pain is caused by the muscles, tendons, and ligaments. Sometimes it feels like it's our joints are hurting but it can just be the muscles, tendons and ligaments that are moving the joints. We have no swelling or redness because fibro isn't considered an inflammatory illness. We also have some fatigue and also many have cognitive memory problems.

The most recent feeling is it's a neurological problem. It's how we perceive pain. Our nervous system can be involved and that could be why you have the buzzing and tingling feeling. I get that occasionally and so do other members here. I even can feel like bugs are crawling on my skin, like water is running down my leg, and I also get hot and cold spots. Fibro can be really weird!

Our tests usually come back negative. It's so frustrating for us and our doctors when trying to figure out what is happening to us. It does sound like you have thorough doctors. Have you been given anything to help with these issues?

Fibro is not considered a progressive illness. We don't get worse and worse. We can get flares which make us feel worse but they diminish and we are back to feeling somewhat better. If you aren't getting help for your symptoms I do suppose you could continue feeling worse until you do get some help.

I have had a lot of back and shoulder pain with fibro. But when I started getting worse and worse, even though I was taking things to help with my pain, I headed to a good board certified rheumatologist. After many tests and two MRI's I was diagnosed with ankylosing spondylitis along with fibro and my other illnesses. This is when I was put back on ibuprofen and was also put on a muscle relaxer. Now I feel quite good!

What helps with one with fibro doesn't necessarily help another with fibro. It's more a trial and error type thing. I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin that has made a significant difference in my pain. I do have fibro along with several autoimmune and inflammatory illness so that's primarily why I use ibuprofen. I walk daily as a form of gentle exercise, do stretching exercises, and I pace myself when doing things. All of the above have helped me live a full and enjoyable life in spite of my illnesses.

I am a positive thinker and I feel that has helped me nearly as much as anything I take for pain. I don't think about what is happening to me. That can make me feel miserable and become depressed. Instead I look at all the positive things in my life and I realize how blessed I really am. I set doable goals each day and pat myself on the back when I reach the goals. I focus on other things and the pain fades somewhat in the background. I keep moving. If you sit or lay too much you will be stiff as a board and have more pain. I figure out how to work around my pain so I actually live a pretty normal life with all my health problems.

Be sure to read Fibro 101...the first thread on the forum. There are good links about fibro and you will learn a lot there. There are links about the magnesium malate and vitamin D3 and how these work in the body. There is also a good link of how to maintain a positive attitude when you have chronic pain. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : BodyBizzare - 5/26/2017 7:30 PM
Thank you Sherrine. I really appreciate your insightful and helpful response. I think part of my problem is that I am a medical professional and I have tried to learn what I can about fibro. My docs are thorough and I appreciate that. It took me a few years to find them. I do wish my rheumy was a little more helpful. She did give me steroid injections when I was having a particularly bad episode and it helped me tremendously for a couple weeks. She said " I don't believe fibro is causing all your symptoms, I believe you are developing an autoimmune disorder" and did not want me taking meds that would " mask the symptoms". But then when my ANA was only 1:80 she passed me back to GP and said " come back and see me when u need to". Steroids always help me feel better which is why I am wondering if I do indeed have an autoimmune disorder in addition to fibro. I told GP doc that I am to the point where I become non- functional. There is never a return to my baseline. I am in a decline as far as quality of life but I am learning to adjust. I work full time in private practice and hospital and I have a young son so it can be difficult to balance my life. Now I am trying amitriptyline, just started. I appreciate the information regarding supplements and positive thinking. I am truly grateful I can still enjoy what I am able to do. My faith helps me tremendously. Last night was a low point for me because I had to cancel plans I had really been looking forward to. I had upper and lower body EMG's and nerve conduction tests completed and it sent my body into a severe flare. I have cervical spondylosis, but just OA. I feel I have a lot of the autonomic symptoms that I am now reading are associated with fibro. My fog and fatigue make me seem like I am on drugs, lol. I have the vertigo and balance issues too when I flare. I do feel empowered with more knowledge and appreciate being connected with others who understand and can relate. Most of my colleagues still don't " believe" in fibro and I hear them always talking about their fibro pt's being needy and drug seeking. I only take Aleve, occasional flexeril and am now trying amitriptyline out of desperation! Thank you for the kind and positive words, it helped me reframe my thoughts about myself and get through this day.!!

Posted By : Sherrine - 5/26/2017 8:27 PM
Be sure and let your colleagues know that fibromyalgia is accepted as a true illness by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, the World Health Organization sites like the Mayo Clinic and the Cleveland Clinic and in and on. They are living in the Dark Ages and it truly is maddening. They should be ashamed of themselves. Instead of labeling patients, how about they learn about this illness! We have had members sent to psychiatrists because they said it's all in their heads! Grrrrr!

One of the first links in Fibro 101 is an interview with Dr. Daniel Clauw. He is one of the top researchers dealing with fibromyalgia. He explains quite clearly what researchers are thinking is causing our pain. You will probably like reading this and feel free to copy it and pass it out to your unbelieving colleagues. They just might learn a thing or two.

I always remind members that 50% of the doctors graduated in the lower half of their class so do your homework when choosing your doctors. My doctors are all board certified and also diplomates.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Lilianna Rose - 5/26/2017 8:53 PM
These studies include evidence of real Pathophysiological changes present in Fibromyalgia:

https://www.ncbi.nlm.nih.gov/pubmed/27157394

https://www.ncbi.nlm.nih.gov/pubmed/23904203

https://www.ncbi.nlm.nih.gov/pubmed/28087191

https://link.springer.com/article/10.1007/s003930050225

All the best
Fibromyalgia, Chronic Fatigue Syndrome, Celiac Disease, Polycystic Ovarian Syndrome, Post-traumatic Stress Disorder, Anxiety, Depression (suspect Bipolar Type II), GERD, Chronic Tonsillitis, Chronic Sinusitis, Multiple Chemical Sensitivity, Multiple Intolerances, Allergic Rhinitis, Lymphocytic Esophagitus, Irritable Bowel Syndrome, Migraines, Scoliosis, Restless Legs Syndrome, Hypotension, etc.

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