NEWLY Diagnosed with Fibro and possibly more (sed rate and C-reactive ?)

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geigertwins
Regular Member


Date Joined Dec 2015
Total Posts : 24
   Posted 12/8/2015 12:10 AM (GMT -6)   
So I just went to see a Rheumatologist this past week and thankfully finally have a Fibro diagnosis. I knew it was that for sure but I was thinking it could be more, possibly lupus. But I do not have the butterfly rash on my face. I was told by him that he saw me as a classic fibro case and wished that he was still teaching and could use me for teaching his interns about what Fibro looks like and sounds like. He then told me that he would need to do some other blood tests to see if I had other auto immune diseases as well. So he sent me right down to the lab and had them draw so much blood, I think 3 or more. I can not even look when they take my blood anymore because it hurts so bad. It literally makes my arm feel like it is sending electric shocks up and down my arm and I am also a really hard stick with super tiny veins. So they always stick me about 5 times on average. So annoying, but anyway back to my question. I had a sed rate, c-reactive protein, rheumatoid factor and HLA B27 antigen and also a cyclic citrullinated peptide drawn. The Sed rate was high but not super high (26) and the creactive was also high (1.29) the rf was 13 and the ref range was 14, and the HLA was negative thank goodness. I am not sure why but that one scared me the most. I am still waiting to go back for the results but luckily I am at a dr that posts the results on a page for patients to see, and I am not sure that is the best idea either because then we just see those results and then think the worst and then google etc. I have googled my little heart out and I am thinking the worst that I have lymphoma or multiple myloma or lyme or god knows what else. I have been on Predisone as another diagnostic tool, my dr said it would rule other RA things in if I was doing better. I feel a tiny bit less pain from the prednisone but still have the pain in all the areas as before and now my stomach is messed up and I have blurry vision in my Right eye. I do not go back for the results until the 22nd of this month and I am so stressed and I am so cranky and extra irritable at work not knowing what is going on with my results and what I could have above and beyond the Fibro. Did anyone else have the same tests drawn to rule out other things and ended up having those as well as Fibro. HELP out a newbie, please. I am going nuts.
 

geigertwins
Regular Member


Date Joined Dec 2015
Total Posts : 24
   Posted 12/8/2015 9:20 AM (GMT -6)   
Thank you very much, looks like I have plenty of reading material while I wait for my kids in the school car loop.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17462
   Posted 12/8/2015 10:13 AM (GMT -6)   
Hi, Geigertwins, and welcome! I had all of those tests done. I had been diagnosed with Fibro for 26 years at the time and then I started to get progressively worse. I was at the point of not being able to walk without unbelievable pain. Fibro isn't considered a progressive illness so I headed to a rheumatologist.

He took many x-Rays, eight vials of blood work and sent me for two MRI's of my hips. My CRP and ESR tests were high and I also was positive for the genetic HLA-B27. With this combination I was diagnosed with ankylosing spondylitis and sacroiliitis along with Fibro. I was put on ibuprofen (again) and a muscle relaxer called Robaxin and I'm now doing great again! Ibuprofen is an anti-inflammatory medication.

Your doctor sounds thorough. I do hope he checks you for Lyme disease, too. It also has many of the same symptoms as Fibro. But you will get to the bottom of this and start getting the help you need.

I would definitely ask about stopping prednisone though. I was on it, off and on, for Crohn's disease and auto-immune inner ear disease and ended up really sick. It also can cause osteoporosis...which I have also.i do have a lot of inflammation in my body but it is caused by other health issues I have. Fibro isn't an inflammatory illness according to the National Institutes of Health. We have people with Fibro that have no inflammation at all in their blood work but yet they still have Fibro.

I use ibuprofen with food, Tylenol, magnesium malate. Vitamin D3, and the Robaxin to help control my pain. I also walk daily as my form of gentle exercise and swim in the warmer weather. I pace myself when doing things and, above all, I keep a positive attitude. I think this helps me the most!

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about Fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. There are links about magnesium malate and vitamin D and how these work in the body and also a great link about 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. Also, I will suggest that you stay away from Dr. Google. There is a lot of misinformation out there and it can be frightening and cause stress and anxiety which will cause more pain. 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

Peskygirl
New Member


Date Joined Dec 2015
Total Posts : 2
   Posted 12/8/2015 1:29 PM (GMT -6)   
I was diagnosed with fibro about 17 yrs. ago. I agree with Sherrine; try to get off the prednisone, and also get tested for Lyme's. You will learn there are many ways to alleviate/and/or pare down the pain. acupuncture, light massage, hot baths with epsom salts; mild exercise; supplements and herbs; lots of Advil. Celebrex helped me in the first few years of diagnosis. if you don't have any heart issues, it is a good one. Also, you will learn that you can't overdo anything, otherwise, it will put you in bed or on the couch for 2 days or so. Eat well and healthy - stay away from junk food. also, go off gluten as much as you can, it will help with the join pain and the tiredness. Rest when you are tired, say no to people who want to push you, do things that uplift you;yes, you don't feel good all the time and can't really plan a lot until you figure out how this is all going to go. It is cyclical, it seems. Some months it is worse than others. Could go on forever, but am just relating some of the things I have learned in the years of having it. Last hint: Don't expect to keep a clean house, because you are going to wear yourself out -- and, don't keep saying you are sorry. You don't have to be sorry; you are in pain, and it is real.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17462
   Posted 12/8/2015 2:35 PM (GMT -6)   
Hi, Peskygirl, and welcome! You have given great advice but I do have a clean house. I do a little each day...pacing myself...and I put things away after using them. This helps a lot. I even steam clean my carpeting. I bought a steam cleaner because I have off white carpeting. I only fill the water tank half way so this makes the machine a lot lighter. Sure I have to fill the water tank a little more frequently but I'm not in a lot of pain by doing this. I usually steam clean one room a day. Pacing myself is the key!

Be sure to read Fibro 101...lots of good info there.

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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/8/2015 7:06 PM (GMT -6)   
I hope you find answers quickly, but don't let "Dr. Google" scare you.

As a person with lupus and sero-negative psoriactic arthritis blood work doesn't always show the answers. It took xrays and a special list of indicators to be diagnosed.

The SED shows some type of inflammation and my RF was 14.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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