Several weeks ago, a hematologist explained to me that eosinophilia was often reported among those who suffered with FMS, yet I haven’t been able to find one other person who shares this affliction. Needless to say, I’m have serious doubts about the relationship. However, I have apparently had the condition for a couple of years and it was only recently that my doctor told me the specifics so perhaps other sufferers do have eosionphilia and just don’t know it. Here’s some information about the condition:
There are five types of white blood cells (also called leukocytes): neutrophils, basophils, eosinophils, monocytes, and leukocytes. These cells are responsible for defending your body and each cell has a specific function. Therefore, when a doctor orders blood tests to indicate which particular white cells are not in normal ranges (WBC with differential), the results can provide clues into what is causing a high or low white blood cell count. For example, neutrophils are the cells charged with destroying bacteria and an elevated number of neutrophils circulating in the blood indicates the presence of bacteria. Monocytes typically indicate a viral infection.
The eosinophil’s primary function is to fight off parasites, but these cells can often be activated when no parasite is present. This can cause some problems! To kill parasites, the eosinophil releases a toxin that can actually harm the body and cause damage to healthy tissues. In some people with asthma, eosinophils accumulate in the tissues of the airway and lungs, damaging these tissues and causing serious complications. Eosinophils can accumulate in any other tissues of the body, but there is not a lot known about what damage they can cause or why they may cause damage in some people, but not in others.
Eosinophilia is the term used to describe the condition in which high numbers of eosinophils are found in either blood or body tissues. The normal percentage of eosinophils in the blood are between 0% and 4%. When eosinophils exceed 6%, it is referred to as eosinphilia. Although eosinophils usually indicate parasite infection, other possible causes include: lung diseases, vasculitis, lymphomas, antibody defficiency, and some rare skin diseases. In some cases, the cause of eosinophilia can not be determined and if cell counts exceed 15% for at least 6 months, the condition is considered hypereosinophilic syndrome. That’s a whole other can of worms that we won’t get into here.
Before I even knew what an eosinophil was, I told my doctor that physical activity during an episode would bring about my more profound symptoms. To me, it seemed that when my muscles were burning energy to work, they were releasing some sort of toxin that would make me sick to my stomach, cause a severe headache, etc., etc. He, of course, let that go in one ear and out the other. When I started learning about eosinophilia, I almost felt vindicated! Blood tests had shown that I had too many eosinophils and having had parasites ruled out, these cells were producing toxins that had nothing else to attack but healthy tissues. Sounds simple enough, right? Well, I have had two hematologists tell me that my eosinophilia is nothing to worry about!
Let’s review… I have symptoms consistent with damage to muscles, joints, and nerves. Blood tests have confirmed I have too many eosinophils which produce toxins known to damage healthy tissues. Yet all of my doctors have failed to see a connection! I’m thinking that the only way to prove a relation to these people is to have a tissue biopsy done to look for evidence of damage caused by eosinophil toxins. Sounds simple enough, right? WRONG! If they don’t see a connection, they see no reason to attempt to prove one. I’ve even asked if we could just try a medication to control the eosinophils (there are a few) and they see no reason to if the eosinophils are harmless. The experts recommend simply treating the “underlying condition” which, in my case, has been determined to be FMS, for which there have been no effective treatments. Feeling my frustration yet?
I’ve had elevated eosinophils for over two years now, but always staying within the “mild eosinophilia” range. The ranges are: 6% – 15% = mild, 15% to 50% = moderate, and anything above 50% is severe. Not only do these cells harm body tissues, but when there are too many of them being produced in the bone marrow, they start crowding out other cells. For instance, if they crowd out red blood cells, you develope eosinophilic leukemia. That’s a bit scary for me because in the couse of a few weeks, my count jumped from 5% to 11%. On the other hand, they’ve been known to go from 8% to 5%. So there are fluctuations both ways. With my last count being at 11%, another 6% increase means a host of other complications. Shhhh…… Hear that? Tick – Tock, Tick – Tock….
Anyway, I am dying to talk to other people who have been diagnosed with FMS who also have eosinophilia. I’m anxious to learn if the symptoms we have are not FMS or any other illness, but signs of damage done by the eosinophils themselves. What’s more, I want everyone diagnosed with FMS to find out if there eosinophils have ever been elevated. Call your doctor’s office and ask if they will check all your blood labs to see. Sometimes the eosinophils can be elevated and the over-all white count still falls within normal range, so you may not have even been told, so ask about this specifically. I also ask that you pass this link on to everyone you know that has been diagnosed with FMS. I’ll be reporting on how my investigation turns out.
Filed under: Fibromyalgia, Health, Life
I have had an elevated eosinophil count for over 10 years. I have also had FMS and chronic fatigue for this period of time.
Most of my doctors have always dismissed my high level of eosinophils, saying that it is parasites or allergy. I have a few allergies so have always taken their word for it, until recently.
I now want to know why the oesinophil in my blood is always elevated, so tomorrow I will see a Haematologist.
I am even more interested as I have had 16 members of my family die from leukemia.
I would appreciate any feedback regarding this.
Many thanks
Rob…
Sorry to hear you haven’t had any more luck with your doctors than I have had with mine. I can’t, for the life of me (literally!), figure out why doctors just ignore this! Eosinophils have been proven to cause tissue damage and been proven to evolve into leukemia, yet even the two hematologists I’ve seen ignore it. I’d be happy to share information I’ve found with you and I hope you will keep me updated on your progress with this.
Thanks for this site. You have great info on here. I appreciate it and am sorry to hear that you have this horrible condition.
This is the first I have heard of someone else having a high eosinophil count who has fibro as well. I suffer from wierd allergies ,anything from animals to chemicals to seasonal to environmental. I also have asthma that is usually always triggered by my allergies. I take Allegra to control my allergies therefore my eosinphil count should correspond to my allergies being under control. I have always wondered why my count never decreased !(I should mention by the way,a high eosinophill count is an indicatin of an allergen presence as well as a possible parasitic infection ie;antibody deficiency)I question how many of us have a very low tollerence to exercise as well? I’m tired of hearing “The best thing you can do is exercise!” Yes’ I have started gradually, even a trip to the store sends me to bed for two days. Anyone else have the same type of problem?
I also have an FMS diagnosis and elevated eosinophils. Mine fluctuate: on one test I’ll have high eosinophils, and the next normal, the next high, etc. (highest has been 12%, lowest 5%) I also have a chronic Epstein-Barr virus and food and environmental allergies, so who knows what is causing the elevated eosinophils. My doctor also does not seem to think it is anything to get very worried about, except in the larger context of how she is trying to get my immune system to calm down.
I have the same exercise-intolerance symptoms that you describe– feeling like my muscles are toxic, or just not working right, but I don’t have nausea. Just a whole lot of severe pain. I am not overweight, out of shape, or otherwise unfit, either. I just can’t tolerate anaerobic use of my muscles. At my doctor appointment yesterday, I asked for and received a referral for both a sleep study and to a muscular dystrophy association clinic to be evalutated for a glycogen storage disease. We’ll see what happens.
K M … The more stories I read like this, the more frustrated I become! On the one hand, I’m grateful to learn that it isn’t just me and there are others who aren’t getting appropriate care (thought I was nuts there for a while), but on the other hand, it is hard to believe that there is such a huge number of people suffering from such similar illness and there is STILL so little known about what is going on!
Also, I’ve had mono before that included spleen and liver involvement so I approached my old doctor about the possibility of chronic EBV and he told me it was nothing like what I was thinking and that almost everyone diagnosed with it had absolutely no symptoms, yet I read about the symptoms all over the internet. UGGGHHHH! The frustration!
By all means… keep us posted!! I am especially interested in hearing how that glycogen storage evaluation works out for you.
Add me to the list of FMS diagnosed and mild eosinophilia. I think every muscle in my body hurts and I am tired of being told its nothing. I have had 2 episodes in the last 3 years of pneumonia on a ventilator and was diagnosed as having ards. I have all kinds of symptoms and no answers. My last doctor visit I was told that he just doesn’t know everything but that I will have other episodes of ards and pneumonia so I guess I am just a walking time bomb! Its good to hear that some one else out there is as frustrated as I am!
idontknow… Perhaps a FMS/eosinophilia combo isn’t so rare? That makes four of us that have met up here. So why no information out there? Thanks for dropping me a line and you’ll have to let me know if you learn more about this.
I’ve been in the insurance business now for more than 10 years, and can tell you all that FMS/CFS is merely a dismissive diagnosis to pacify the patient. That is, give the patient an answer to their symptoms without tests or treatment. I’ve drilled doctors on this and some have admitted this is true.
Doctors are paid incentives by the insurance company to keep patient care costs down. That, in turn keeps the insurance companies profitable, and people are suffering and dying due to lack of needed treatment.
One documented court case states a man complained of indigestion and severe heartburn for 3 years on about six different occasions to his doctor. The patient was told to just keep taking his rolaids.
The patient ended up dying from stomach cancer. In the court case, the doctor admitted he did not test further because the insurance company would not pay the doctor if he did.
Here’s my story…
My eosinophilia is due to intertistal lung disease (ILD). The pain in my chest (which many have dismissed as FMS/CFS) is because of the swelling in my lungs due to this ILD. Because it was not treated, the tissue in my lungs has turned to scar tissue.
The headaches and loss of vision and balance also dismissed as FMS/CFS is caused by diseased sinuses, again due to lack of treatment for a sinus infection.
The Foggy thinking, fatigue and bone pain is due to the iron deficiency anemia, and lack of oxygen in my body…not FMS/CFS.
Neck pain is due to thyroid disease…not FMS/CFS.
Pain all over is due to enlarged liver, spleen and lymph swelling…not FMS/CFS.
And still, doctors give me a dx of FMS as they are acting on what the insurance companies tell them to do to keep costs down.
Before healthcare reform in 1995 or so and the invention of HMO’s, who ever heard of FMS or CFS?
It was pre-1995 that health insurance was not-for-profit…until they lobbied (paid) our wonderful government officials to allow health insurance companies to run for profit.
(Are you seeing a pattern here?)
It’s been my experience since 1995 that if you don’t ask for specific tests, no doctor will offer to test further.
So if you are looking for answers from your doctor, I suggest you research your symptoms, and ask your doctor for specific tests in order to get some answers. Don’t settle for FMS or CFS.
What’s the long-term answer to this problem?
Insurance companies should not be allowed to run for profit. Period.
And it’s time for us citizens to exercise our liberties and let our wonderful government know that we will not stand for this senseless suffering and dying to keep our insurance company profitable.
So gather up your evidence, write all your federal elects and demand an investigation!
If you all don’t act, the government elects and insurance companies will continue to line their pockets and we will continue to needlessly suffer.
We do have a right to Life…
intheknow: You are mighty convincing! I’m going to try and learn a little more about all of this as it would certainly explain the run-around I’ve gone through. Thank you so much for your comment and advice. I hope many others will come across it!
Hi, My Eosinophil count has steady increase from 9 (normal range is from 1-6) two year ago to 35 !!! The doctors tired to treat it with Anit worms medicines but it has not helped. Now the Hematologist will do the Bone marrow test in few weeks time.
Sam… I truly feel for you! I’ve come to learn that doctors just really don’t know that much about Eosinophilia. I even had a hematologist tell me once that it was caused by Fibromyalgia, which we’ve since proved I don’t have. The bone marrow test sounds like a good plan and I hope you will find your way back and let us know what you find out.
intheknow: I am truly sorry for all of your health problems but FMS is REAL. I was diagnosed around 1988 so there goes your 1995 theory. I have every test you can think of. I didn’t “settle” for a FMS diagnosis. FMS is what I have. I have many other health problems – some related to FMS and some not. But your dismissive attitude toward FMS is hurtful to those of us who are actually very ill with this very REAL disorder. Of course you should demand testing of every sort to rule out other things. There are many conditions that mimic FMS so if on your first or second visit to a doctor you are diagnosed with FMS you SHOULD question that diagnosis and ask for specific tests to rule out other conditions. I was fortunate enough to have a doctor who did all the testing first without dismissing my complaints. I was the one, who after 3 or 4 years, asked my doctor if it were possible that I have FMS. He said he was leaning in that direction but since it was basically a “waste basket” diagnosis he wanted to real everything else out first.
Just because you hear more about FMS and CFS now than in years past doesn’t mean they didn’t exist. Who heard of autism before the 1940s when Leo Kanner introduced it to the world? Does that mean there were no autistic people prior to 1943? Of course not. They were either given the wrong diagnosis or no diagnosis at all. Same thing with FMS and CFS. So please be more respectful to those of us who suffer from these horrible, debilitating illness every single day.
I see that no one has posted on here for quite some time…2 years or so. I dont know if anyone else is still following this thread but I figure ill post anyways and see if I can get it going again. I’m disappointed that no one came back with results or anything. *sigh*
anyways for for the past ten years or so ive been on what feels like a slowly progressive downward spiral. Ive had many new issues popping up along the way and seems like when they show up many times they become chronic issues.
I have been diagnosed with FMS and chronic MPS (myofascial pain syndrome) within the last year but have been suffering for a long time. By the way if you dont know what MPS is you should really look it up because if you have FMS there is a good chance this pertains to you. I probably have CFS too but it seems to me like that diagnosis wouldnt even matter to my doctor since they dont do anything for you for that either.
When I was diagnosed last june of 2008 with FMS it was after having blood work finally done for my symptoms instead of just telling me i had poor posture. (yeah my muscles are too weak and fatigued to hold me in good posture) but anyways that was the first time any one looked into it further.
The blood work determined a positive RF factor and some borderline elevated inflammation so they sent me off to the rheumatologist who diagnosed me.
6months later they ran some more blood work for something else i forget what and called me. they said back in june when they had done the blood work my eoisinophil count was elevated but that can be for any number of reasons like you said and usually will go down on its own. but when they tested me again this time they noticed it was still elevated. so they called me in for more blood work to see if they could figure out what was causing it.
I have no allergies. I do have chronic sinus pain but no other issues there that i know of. They did a stool sample to rule out parasites even though this would be an unlikely cause.
The eosinophil count was still elevated and i tested positive for the Epstein Barr virus and looked like I was in remission and had been infected some time in the spring. My doctor then decided we would do more blood work in another 2 months to make sure the eosinophil count had gone down.
2 months later the count had not gone down..or at least hadnt gone down enough. She said by now if it had been any virus it should have come down by now and was referring me to the hematologist. she told me that at that point she was not concerned, and that its possible that this elevation is just whats “normal for me”. But she wanted to cover all the bases just to be sure.
So another month or two later im finally seen at the hematologist (they were all booked up apparently). After telling him about my muscle pain, fatigue, nausea, abdominal tenderness, some weight loss and etc he explained to me that it could just be an allergy to something like a medication or seasonal or food allergies. Or that it could be a connective tissue or muscular disease (which is what he is leaning towards). He said that he doesnt feel its a blood disease like leukemia or anything like that because it is only mildly elevated.
He ordered a ton of blood work for me and wants to see me back at the end of this month to go over everything. I have a list of the blood tests he ordered and it looks to me he is checking everything he should be. I hope he can help me and figure out something but i do have my doubts.
Also my grandmother died of leukemia so that is a little worrisome but i dont feel its leukemia yet. I feel like i have some sort of muscle disease that is turning my muscles into rock. Many muscles in my body have “muscle knots” or “trigger points” but im told these can be worked out but i have never once had a knot go away. only more created.
Im sorry that this is so long but I always feel the need to explain as clearly as possible. I am checking the box to be notified of follow-up comments. Thanks for reading!
ErinAnn
oh yea and I will REALLY post a follow up of what happens with the hematologist.
If you ever want to hear a reader’s feedback
, I rate this post for 4/5. Detailed info, but I have to go to that damn google to find the missed bits. Thanks, anyway!
For about 3 weeks now I have had stomach aches, nausea , and a lot of gas, , it happens aftet i eat I thought it was a ulcer, galbladder I went to the doctor they ran some test and said my blood work showed my enolsinphillas are up 50% they said I had hyper enosinphillas syndrome. 2 days later my enosinphillas were down 40% I had a ct scan done, and a ultra sound of the heart now I am eating on the results! Let me know how yours went
I had an appt with the hematologist again to review the blood work he had done. He told me that it is not cancer, and that he doesnt believe it to be a blood disease either. Most of my blood work was normal except for the mild eosinophilia and a positive ANA test that keeps showing up. He said that the ANA level was “actually quite high” but that all of my other bloodwork was fine…my protien was a little low as something else being a little low but I forget what but nothing that would indicate a blood disease or cancer. He had also checked things that would be elevated if it were an allergic reaction and those were all normal. He said that the only thing he could do would be a bone marrow biopsy but that he really didnt feel it was necessary, but that he would if I wanted to have it done.
He thinks that with all of my symptoms and based on the bloodwork it looks like I have some kind of rheumatic/autoimmune/connective tissue disease and that he recommends I go and see a rheumatologist again.
I also talked to him about all the nausea and things ive had going on lately and that my primary wants to do and upper endosopy and possibly a CT scan and he said that would be a good idea. He mentioned that its possible the eosinophils were coming from GI issues.
So basically im going to go back to my primary and see if we cant figure out this GI stuff and then eventually ill go to the rheumatologist. The problem is that autoimmune diseases can take years to diagnose, so who knows when they will figure it out. I’ve done my fair share of my own research and most things dont really fit, at least not yet anyways. Ill talk to my primary and see where she wants to go from here.
Wow, I also have a high eosinophils count, 18 where 0-5 is normal . I also have been dx with fibro. I was put on steroids for 6 mths. All I got from that was 25 on weight gain. The count went down but came right back up within the month of getting off the steroids! They say I have them stumped! It doesn’t take long to lose hope with Dr.s. Still feel yuky, achey, feverish ( no fever) lots of sinus headaches, tired, tired,tired! All other blood work comes back normal. Anyone have suggestions on where to go next? Hemotoligist I have not seen. Should I go? Thanks to those who take time to reply.