Is it my Fibro?

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ebonyeyez06
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 9/21/2017 7:43 PM (GMT -7)   
Hello,

I'm a new poster here so bear with me. I was diagnosed with with Fibromyalgia almost 2 years ago but I know I have had it a lot longer. Recently due to other symptoms I had lab work done and SED RATE was high 65 back in July and 111 currently and my CRP was 2.90 in July as well, that one wasn't retest. My question is has anyone else experienced such high levels of either lab with their Fibromyalgia or could it be something else. I have been Referred to a Rheumatologist but that in another 3 weeks.

Ljm2014
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Date Joined May 2014
Total Posts : 2076
   Posted 9/21/2017 9:24 PM (GMT -7)   
Hi,

Often our inflamation rates are low, so you could have more than one issue going on..its good you will get all that checked out..

So many of us have multiple issues to deal with, makes it a little more complex..but hey one day at a time, right?

One of my physical therapists, explains fibro as, we have inflamation in the cells , that does not show in the bloodwork..its nuero-inflammation..

I take some anti inflammatory meds , as well as supplements to fight that..

Lj

ebonyeyez06
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 9/21/2017 9:30 PM (GMT -7)   
Thank you so much for your response. That's what I was thinking as well. In my research I didn't see anything linking fibromyalgia to increase sed rate and CRP but I wanted to double-check just in case I was overlooking anything and you are right it is a one-day-at-a-time process.

Sherrine
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Date Joined Apr 2005
Total Posts : 17523
   Posted 9/22/2017 5:14 AM (GMT -7)   
Fibromyalgia is not considered an inflammatory illness. We have members who show no inflammation in their blood work but yet have fibro.

I'm glad you are seeing a rheumatologist. I saw a board certified rheumatologist when I was experiencing more and more pain and was diagnosed with ankylosing spondylitis along with fibro. My inflammatory markers were high but it was the AS causing that. Your rheumy will help you. Let us know what you find out because we do care about 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

Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 335
   Posted 9/23/2017 4:19 PM (GMT -7)   
Hi Ebonyeyez. Hopefully this doesn't need edits before my tablet runs out of juice!
My SED remained elevated for years, but I don't know what it is lately, cuz I am avoiding Dr appointments.

The first link I have for you is to a thread at HealingWell about some of the Fibromyalgia inflammation studies. CRP and SED (also called ESR/erythrocyte SEDimentation rate) should be in bold letters there, hopefully, can't remember for sure. These are some studies that looked for specific inflammatory cytokines, CRP, SED, or other markers of inflammation. These are small studies, we can't call the evidence conclusive, but blame that on a lack of research money for fibro from the oh-so-lame NIH. I haven't sought out such studies for such a long time, so there may be others in recent years, idk.

www.healingwell.com/community/default.aspx?f=24&m=2756942

A couple of the CRP findings I see, searching just now in my "Notes" app:

"There were no statistically significant changes in biomarker levels, although total group ****C-reactive protein [CRP]***** was elevated at baseline (4.7 mg/L), indicating an inflammatory process. "
Title: Effects of guided imagery on biobehavioral factors in women with fibromyalgia. [number: 72 women]
Journal of Behavioral Medicine 2014. Menzies.

////////////////////////

Inflammatory/Stress feedback dysregulation in women with fibromyalgia.
Bote ME, García JJ, Hinchado MD, Ortega E.

Source
Group of Immunophysiology, Department of Physiology, Faculty of Sciences, University of Extremadura, Badajoz, Spain.

Paraphrasing: 100% of the fibromyalgia group had markers of an inflammatory state and altered stress response. They say that was demonstrated by high circulating levels of interleukin 8, a major mediator of inflammatory response (an inflammatory cytokine), and ***C-reactive protein***, which rises in response to inflammation.

----------------------

There is a brand new post about glial cells and Neuroinflammation. I can't even remember if I should explain glial cells to you....maybe they are explained in this. If it's as clear as mud, then what you want to do is watch Linda Watkins explain glial cells' influence on Neuroinflammation, at the next link, a YouTube video.
Just part of it:
"The increased pain sensitivity in FM could all come down to immune cells in the brain called glial cells (microglia, astrocytes, and oligodendrocytes). Despite the fact that glial cells are much more common than neurons, they were all but ignored until about 10 years ago. They’re being ignored no longer. When activated, these cells pour out inflammatory factors that tweak the pain pathways, clean up cellular debris and kill pathogens.
When they’re turned on full-time, glial cells can have pathological effects. They’re linked to pain sensitization because they emit many factors (brain derived neurotrophic factor (BDNF), IL-1B, TNF-a) known to send our pain-producing nervous system pathways into a tizzy. When they’re turned on full-time, they produce a state of chronic inflammation found in many central nervous system disorders."
Full:
/www.healthrising.org/blog/2017/09/15/glial-cell-inhibitors-next-sleep-drugs-fibromyalgia-chronic-fatigue-syndrome-mecfs/

Linda Watkins, PhD, speaking I believe to imaging professionals about chronic pain and glia....2011? Pick a good brain day to watch.
/youtu.be/KYyvEyroDgk

And there is the topic of mast cells, (which btw engage in cross talk with glial cells), and may be key for many fibro patients. Certainly for me. I have seen mast cells described as the "gatekeepers of pain". They are able to activate and release mediators of inflammation.

To understand mast cell disorders see my thread at myPatientMatch (.com), use the search feature, search for the word "Reference". The first section explains how mast cells work, in pretty general terms. Don't try to read it all. But skip to the Fibro/mast cell research, which is at the fifth section/avatar at the Reference Thread to share mast cell info.

btw, A Mast cell patient reassuring another member, wrote on a thread about CRP today: "My CRP has been as high as 81, as low as .5. It's one of the few blood tests that actually shows how I feel."

In this HW thread, I linked to some patients' posts about using the steroid prednisone to help fibro inflammation/pain, here:
www.healingwell.com/community/default.aspx?f=24&m=3686174

(Steroids NOT recommended, unless used very short term, or if there is no other choice. Some mast cell patients do need them at times.)

Post Edited (Rockon) : 9/23/2017 5:34:12 PM (GMT-6)


ebonyeyez06
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 9/23/2017 8:40 PM (GMT -7)   
Thank you Sherrine, I will report back after my visit with the rheumatologist. Thank you Rockon for the great information I will be sure to check out those links this is really helpful. I can't believe someone had a CRP of 81 that's extremely high.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17523
   Posted 9/24/2017 6:05 AM (GMT -7)   
Here is what the American College of Rheumatology gynhas to say about fibro and inflammation.

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

"It does not cause inflammation or damage to joints, muscles or other tissues. However, because fibromyalgia can cause chronic pain and fatigue similar to arthritis, some people may advise you to see a rheumatologist. As a result, often a rheumatologist detects this disease (and rules out rheumatic diseases)."

Fibromyalgia - American College of Rheumatology
American College of Rheumatology › Fi...
~~~
This is what the National Institutes of Health has to say. Read the second paragraph under "What is Fibromyalgia." As you see, they also say fibro isn't an inflammatory illness. If you are having inflammation, something else is causing it.

/www.niams.nih.gov/health_info/fibromyalgia/

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) : 9/24/2017 7:08:48 AM (GMT-6)


Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2076
   Posted 9/24/2017 4:24 PM (GMT -7)   
Although, my bloodwork shows low inflammation,

I cannot move without taking anti-inflammatory

Before i took any meds, i found that motrin just would often take care of my pain, so my dr wrote a perscription for an anti inflammatory which is a cheap drug..

At times i have tried to go off of it , since its not great to be on..but i simply stiffen up without it..

Go figure?

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17523
   Posted 9/25/2017 5:31 AM (GMT -7)   
Lj, I was the same way. I even had and have to take three ibuprofen at a time for them to work for me but I blamed this on Fibromyalgia. I had low inflammation showing occasionally, but you can have that with a little infection. It wasn't something that raised red flags.

Then I started getting worse and worse and that sent me to see a rheumatologist. By that time my inflammation markers were out of sight! And as you know I was diagnosed with ankylosing spondylitis and sacroiliitis. My rheumy said he thought I've had these for years but kept it under control with the ibuprofen I was taking.

So I do agree with the medical community on this issue. We have members with no inflammation showing and they still have the pain of Fibromyalgia. So this is why I always say there is something else going on that is causing the inflammation. It's too easy to blame fibro like I did. I now am taking the right things and feel better than I have in years despite the fact I'm no spring chicken anymore.

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

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2076
   Posted 9/25/2017 9:46 AM (GMT -7)   
Yes sherrine,

We often have more than one thing at a time, so it gets complex.

Glad you feel better now 😊

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17523
   Posted 9/25/2017 10:14 AM (GMT -7)   
Thank you! And, yes, I still take ibuprofen at least twice a day. It's been a miracle drug for me and it sounds like it helps you too. It was still a prescription medication when I started taking it. Now that it's generic, it's a lot cheaper. Yay!

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

ebonyeyez06
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 10/11/2017 1:28 PM (GMT -7)   
Well I finally went to the rheumatologist and he basically said that he cant help me and that it didn't look like a rheumatological issue. He doesn't know why my sed rate is high. He gave me a link to a fibromyalgia website and told me to see if that helps and to see if I find any of that information useful.

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2076
   Posted 10/11/2017 3:03 PM (GMT -7)   
Wow that dr sounds like a gem..

In many areas rhuemys are the ones that treat fibromyalgia.

I only see my primary, but his wife has fibro, so he does help me some with it.

Are you taking anything over the counter to help you?

Magnesium and malic acid are helpful to our muscles..

Will you primary dr, work with you?

ebonyeyez06
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 10/11/2017 9:29 PM (GMT -7)   
I used to take magnesium, calcium and zinc and none of that helped. Currently take a couple of herbal supplements for inflammation and I've tried some prescribed medications as well like cymbalta, amitriptyline and muscle relaxers and those don't help either. My primary care physician is who I was working with and she's been really helpful however it just seems like none of the things that she's offered has helped.

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2076
   Posted 10/11/2017 9:56 PM (GMT -7)   
Well maybe she can start working with you again.. see if anti inflammatory helps,


I do take low dose tramadol to keep the pain levels lowered, also some anti inflamation.s...
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