Many people misdiagnosed with Fibro when they actually have CIRS

Posted , 6 users are following.

For anyone that feels their diagnosis of Fibromyalgia was given to them because their doctor could not find anything else or as a last resort to prescribe meds for relief, you may consider CIRS. CIRS can cause cramping, pins and needles, pain, chest pain, headaches, lack of energy, brain fog, etc and most of all the normal blood tests will all return as NORMAL! It took me almost 2 years for a doctor to finally diagnose me. I was told I had Lupus, Fibro, Chronic Fatigue, and the most frustrating that I was healthy ! With CIRS the blood tests that will be abnormal are typically TGF beta, VegF, C4a, C3a, cortisol, mmp9, ADH, an mri will show abnormal results but only if done with a neuroquant. I searched the internet so many times out of frustration with doctors, so I hope if there is someone searching for an answer they may consider this. . Best of Luck to everyone!

0 likes, 5 replies

Report / Delete

5 Replies

  • Posted

    Wow never heard of CIRS Will look this up as my son has these symptoms , thanks for info

    Sue

    Report / Delete Reply
  • Posted

    It 's so nice of you to share this information- thank you. For years I've felt misdiagnosed, even from the age of 13 when I was told to " pull yourself together" by a useless GP who said I just didn't want to go to school and there was nothing wrong with me. I felt as if I had 'flu almost constantly, couldnt think straight ( brain fog as it's now known!) , extreme fatigue aching limbs and weakness. Symptoms gradually disappeared after 9 months only to reappear at age 18 after a bout of glandular fever which the same GP had failed to diagnose but was discovered by a locum Dr who sent me for blood tests. Several months later, my old symptoms began again and lasted once more,around 9 months or so .This time they said it could be " Yuppie 'flu " as it was commonly known then, later to be known as Myalgic encephalomyelitis ( ME). Many Dr's told me that ME didnt exist and was in the mind and I was told by one hospital Dr to " take up tennis". Great advice when you can barely walk . Since then, I've had numerous flare ups of these symptoms over the years and yhey can last anything up to a year or more before going into remission. Post viral syndrome has been another diagnosis and in 2011 it was finally decided, after a major flare up that it was Fibromyalgia. Im currently in the " in between" stage of relatively mild symptoms which I try not to let hamper me too much. At least my symptoms are in remission for the moment but I will definitely look into this CIRS as Ive had this on and off for 50 years! Once again, many thanks for the information.

    Report / Delete Reply
  • Posted

    thankyou. will ask my gp. for years was told that it was all in your mind and then a young hospital doctor diagnosed fibro. a few years later i developed polymyalgia. so round and

    round the circle goes. lol. it is certainly no joke as these are two of the most painful and

    debilitating "hidden" illnesses. people have said to me that it doesnt look as if i have anything wrong etc. etc. will let you know how i get on. however, because of anaemia, caused we think because of taking metformin, the hospital put me on monthly B12 injections and also iron infusions. these certainly help.

    Report / Delete Reply
  • Posted

    I'd never heard of CIRS so thank you from me too. I looked it up and read the following:

    "CIRS or Chronic Inflammatory Response Syndrome is really an umbrella term for symptoms with a few different causes. It can be caused by tick borne illnesses, mold exposure, and more. Characterized by extreme exhaustion, weakness, and cognitive difficulties, CIRS is a debilitating condition that’s inherently complex."

    I look at this forum because I know that, since Fibromyalgia doesn't have any particular cause, it's a useful diagnosis for doctors to give when they really don't know! I advocate for people harmed by a group of antibiotics called fluoroquinolones (e.g. Cipro) and the symptoms can be similar to those described here and are often mistaken for Fibro.

    There are many, many toxins out there - pollutants in the environment, man made chemicals and pharmaceuticals as well as natural poisons like molds and tick bites. Our bodies only really have one type of response - a general breakdown of systems which produces the symptoms we all get to know as all-over pain, lack of energy and brain fog - with many extras thrown in, of course.

    Once we are overcome with our toxic load, however it was caused (maybe from many different sources over the years until one just thing pushes us over an edge), we are in this world of pain and doctors have absolutely no idea what to do with us. They offer more pills (which usually add to the poison) or exercise (really doc?!) when we simply need healing.

    This isn't so much an answer but a reflection on the state of the world we live in and our reliance on chemicals and drugs!

    Report / Delete Reply
  • Posted

    there are no blood tests that can show fibromyalgia,i was tested feom my head neck arms hands upper legs calfs,feet,muscles and tendons and also my physio has ttested me has well, i get spells

    of it,it time it is different each time,my calfs go week,and arms,hands and neck the hot and cold temp

    all the muscles and tendons are sore,the cramps have started but to help with that drink tonic water

    and that helps,but also the physio is a great help,i go on a leg machine and that helps the weekness

    in the legs i am on there an hour,them other parts of my body gets treated on the thursday which

    again help,i had a month of fibromyalgia then nothing for a week then again for 11 days,and it has just started to flareup to night with the burning,also hot and cold,and calfs.

    i have 23 symtoms of fibromyalgia 1 in 25 people get it

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up