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Posted By : Lisabeans - 7/13/2017 3:59 PM
Hope everyone is feeling well. I just got diagnosed this afternoon with fibro. This is my second rheumatologist and I have been struggling for over 3 years. My first rheumatologist says I have an inflammatory disease but wasn't able to diagnose it yet. I had a positive Ana blood work but all others are negative. I do respond well to prednisone. All though I am happy to have a name for my illness I am still perplexed. Could I have an ai issue along with fibro? Also, the rheumatologist said they don't treat fibro. Who does? I really feel lost. Thanks in advance.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Ljm2014 - 7/13/2017 11:01 PM
Hi lisa,

Often people with fibro are treated by rheumies, but i just see my primary..

His wife has fibromyalgia also, so he tries to help..i am pretty med sensitive so i look to alternative helps, like supplements, heat, stretching...etc..

I use a sleep aid and low dose tramadol, as well as anti inflammatory

My physical therapist says that we have inflammation that does not show in our blood work, but rather its neuro inflammation in our nerve cells..

Lj

Posted By : Lisabeans - 7/15/2017 5:47 AM
Thanks. I am going back to them in 4 weeks. I am so confused as to how the doctors see different things. First rheumatologist says I have an inflammatory disease since I respond well to prednisone and have a positive Ana. Second one says, the positive Ana is low and all other blood work is negative so it isn't inflammatory. I just want the pain to be under control.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Sherrine - 7/15/2017 7:15 AM
Hi, Lisa, and welcome! I'm sorry I'm late in responding but I've been dealing with a family crisis for the past three days. Thank God all has worked out.

Now, first of all you need to find a good, board certified doctor who treats fibro patients. Your latest rheumy isn't good. Rheumatologists are the doctors that usually treat fibro but some PCP's and Internists are knowledgeable in this illness too. You definitely need a doctor that will work with you and listen to you.

Next, the ANA is only one of many tests to test for inflammation. If your other inflammatory tests, like the CRP have come back normal, the ANA doesn't mean much at all. You could have a cut and the ANA could be elevated from what I understand. You do have ulcerative colitis and that is inflammatory so perhaps there is a little inflammation going on there even though you are not having any symptoms at the present time. I have Crohn's disease and don't have the basic symptoms going on at this time but it is still an inflammatory illness. Actually all my inflammatory markers are extremely high because I do have Crohn's, diabetes, autoimmune inner ear disease, and ankylosing spondylitis...all of which are inflammatory illnesses. So, yes, you can have inflammatory illnesses along with fibro.

Fibro isn't an inflammatory illness according to the American College of Rheumatolgy. I know because of the pain it feels like it's inflammation but it isn't. We have members with fibro who test negative on all inflammatory tests!

Prednisone doesn't usually work that well for fibro and it isn't a good drug to take long term...unless you need it for another major illness. I have never heard of it being prescribed for fibro since fibro isn't considered and inflammatory illness. It definitely can cause osteoporosis and other problems. I had to take a huge dose of Prednisone for one month to see if it could stop my progressive hearing loss and I ended up so sick! My immune system shut down and I was catching everything. I was flat on my back, which is definitely not me, and it took me four months to wean off the stuff.

Doctors usually will suggest Cymbalta or Lyrica or Savella for fibro. I didn't want to use those medications because I have had bad reactions to some meds so I tried over the counter things and these help me. I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer called Robaxin that has made a significant difference in my pain. I also walk daily as a gentle form of exercise. I hate exercise but after my walk I have less pain and more energy. I pace myself when doing things too. If we overdo, we definitely pay a price in pain. Hot showers help, I do Trigger Point Therapy on myself to release trapped muscles, and I get a gentle massage once a month. All of the above have helped me and I live a pretty normal and enjoyable life in spite of this illness.

Positive thinking helps me a lot too plus I don't focus on how I'm feeling. Focus on other things and the pain fades somewhat in the background.

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 they work in the body and there is even a link on 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

Post Edited (Sherrine) : 7/15/2017 7:22:57 AM (GMT-6)


Posted By : Lisabeans - 7/15/2017 7:33 AM
Thanks Sherina.


My colitis is in remission right now and has been since 2012. My GI doctor and first rheumatologist believe the colitis is not causing the positive ana. I did prednisone for a short time and it worked wonderfully. The second rheumatologist said I had 14 of the 18 pressure points so it Is definitely fibro. He also said I may have raised or lupus but don't have enough symptoms to say yes. I am going to redo my blood work and stop the Arava for now per his instructions. I go back in 4 weeks but can call if I am not doing better. They increased my amatriplyne to 50 mgustin05@gmail.com and said that should help. I just feel so overwhelmed and confused. My second rheumatologist is from Penn Medicine and has a great reputation.

Glad your family crisis worked out. I hope for the best.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Sherrine - 7/15/2017 8:50 AM
It looks like doctors aren't using the tender pint test as the main method of diagnosis. One doctor might apply more pressure than another so it isn't fool proof. I'm sensitive all over and if I'm pressed hard, anywhere on my body, I do feel a lot of pain. I can't even stand a firm hug! Here is an article about not using the tender point test.

/www.spineuniverse.com/conditions/fibromyalgia/2010-american-college-rheumatology-fibromyalgia-diagnostic-criteria

This is a link to the American College of Rheumatology site. There is a lot of good info here too. It's very good information.

/www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia

I'm just really surprise that your second rheumatologist said they don't treat Fibromyalgia! This makes no sense to me since most of our members are being treated by rheumatologists and they are the doctors suggested to see for diagnosis and treatment. I see my rheumy every six months and they are the one who prescribes the Robaxin for me that has helped my muscle pain immensely. The rest of the things I take for fibro are over the counter.

You do need treatment so what does this doctor suggest you do if they won't treat you?

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

Post Edited (Sherrine) : 7/15/2017 9:03:31 AM (GMT-6)


Posted By : Lisabeans - 7/15/2017 10:03 AM
Shrine,

This doctir did not tell me what to do at this point. They want to review my new labs and see how the increased amitriptyline works in the next few weeks. I spent most of the appointment with the PA. When the doctor came in to discuss everything he wasn't sure if lupus should still be considered. Since I get swelling and respond well to prednisone he says I may an ai issue but with all negative blood work he felt the fibro diagnosis was the way to go. I should be happy to have a name for my pain after 3 years of suffering. I am not. I am more confused. Plus my husband is on disability and his job let him go so there is major stress around me. I feel scared and confused. I don't want to burden my husband (even though he understands) with all of this. Plus I need to push myself to work (I am a realtor and Thirty one consultant) and keep up with my 4 kids. Sorry to ramble it I know you wonderful people understand how I feel.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Sherrine - 7/15/2017 3:46 PM
All the stress that is around you isn't helping matters either. You know many people have a vitamin D deficiency and that can cause more pain. People aren't out in the sun much and if they are they wear sunscreen. I live in Florida and am in the sun a lot but wear sunscreen and my vitamin D levels were in the dumper. I now take vitamin D3 and have less pain. The same goes for magnesium. Magnesium malate is easier on the digestive system and some studies have shown it helps with fibro pain. Walking does really help too. These suggestions don't cost like the prescription meds. I do take Robaxin but that costs next to nothing too so I don't have the expenses some have on this forum. It might be worth a shot.

Sherrine [\blue]
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 : Sherrine - 7/19/2017 10:16 AM
Yes, Rockon and I do disagree on the topic of inflammation. I have had chronic inflammation caused by several autoimmune problems. But, I didn't develop chronic pain in all four quadrants of my body until years later. We have member who have been tested for inflammation and there is none in their body but yet they have the chronic pain of Fibromyalgia. I think people with fibro who test positive with inflammation have something else going on in their body because of this.

This is from the National institutes of Health website.

"Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles, or other tissues. Like arthritis, however, fibromyalgia can cause significant pain and fatigue, and it can interfere with a person’s ability to carry on daily activities. Also like arthritis, fibromyalgia is considered a rheumatic condition, a medical condition that impairs the joints and/or soft tissues and causes chronic pain."

This is from the University of Maryland Medical Center.

Immune Abnormalities

"Fibromyalgia has symptoms that resemble those of some rheumatic illnesses, including rheumatoid arthritis and lupus (systemic lupus erythematosus). These are autoimmune diseases in which a defective immune system mistakenly attacks the body's own healthy tissue, producing inflammation and damage. The pain in fibromyalgia, however, does not appear to be due to autoimmune factors, and there is little evidence to support a role for an inflammatory response in fibromyalgia."

This is from the American College of Rheumatology website.

"The causes of fibromyalgia are unclear. They may be different in different people. Current research suggests involvement of the nervous system, particularly the central nervous system (brain and spinal cord). Fibromyalgia is not from an autoimmune, inflammation, joint, or muscle disorder. Fibromyalgia may run in families. There likely are certain genes that can make people more prone to getting fibromyalgia and the other health problems that can occur with it. Genes alone, though, do not cause fibromyalgia."

These are three examples from reputable sites as to why I tell members that fibro is not an inflammatory illness.

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 : Lisabeans - 7/19/2017 10:29 AM
Thanks everyone. Still very confused and in massive pain right now since stopping the arava. Once I do the bloodwork, I will call the rheumatologist back and see what I can do. I has been hard on me during this vacation (camping). Thank God my husband and kids are so supportive.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

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