Guidance to a new potential sufferer

[Tigger67]

Hi all I've been experiencing hip and back pain for a while but had put it down to menopause. But this pain is now every night and I wake up having to move all the time. I've now been getting a clicking in my neck and neck pain. I didnt think this was fibromyalgia as my sister has this but her symptoms are totally different so didnt even consider it until reading on here what other people have said. How do you get diagnosed with fibromyalgia? I think my sister said a blood test? Any advise please

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

There is no blood test or any other test for fibromyalgia. Any tests that are done, are to rule out other conditions (although it is possible to have other conditions and fibromyalgia)

Diagnosis is based on your medical history and you having the four main symptoms of widespread pain (which often moves from one place to another), fatigue, cognitive disfunction /brain fog and unrefreshing sleep

[Tigger67 in reply to Hazel_Angelstar]

Thank you for your message much appreciated

[Lexilou70]

Hello. Sorry to hear you are struggling with the pain. As a 51 year old how has been diagnosed with Fibro about 7/8 years ago and now also going through the menopause, I find the two blur into each other with a lot of the same symptoms. This is one of the things I find so frustrating! They both can have very similar symptoms.Unfortunately I think you may struggle trying to find out what is causing what.

I really hope you have a good GP, this is first step to getting the right advice & treatment (this is what I have found through experience.

Best wishes to you. If you haven’t tried Epsom salts baths, give them a go 👌🏻 Its not permanent relief but it really helps before bed. Best wishes lovely 😊

[Tigger67 in reply to Lexilou70]

Thank you for the suggestions I will try the Epsom salt bath I'll try anything to get a good night sleep and yes I thought I was menopausal but I've got a call with my gp on thursday so will mention fibromyalgia to her. Again thank you and hope you keep well x

[Cazfib in reply to Tigger67]

Yep, I've begun HRT after being diagnosed with fibro about 6 years ago. Several symptoms have been helped but my lower back and hip pain persists. I hope you find relief. The only thing that helps me is to avoid sitting in a comfortable, soft chair to relax as it ends up doing quite the opposite!

[Lexilou70 in reply to Tigger67]

Thank you. Hope all goes well with your GP. Keep pushing & don't get fobbed off. Stay well x

[Sarahvit]

Yes there is a blood test the FM/a or FM/c (couldn’t remember the blood test name when I started trying but am leaning towards the FM/a 🤔)here in the US it is done by EpicGenetics based out of California. It was been quite a while since I herd anything else about it. EpicGenetics was doing a study on people with fibromyalgia checking to see if they had the COVID antibodies. They first did the FM/a test first and then checked for COVID antibodies. This test was apparently very controversial a year ago. Seems I herd something since then that it was starting to be more accepted in the fibro world. If your doctor doesn’t believe in the blood test then it is a ruling out of other diseases that could cause the same symptoms and has to be wide spread pain in the body lasting over 6months and having 11 out of 18 tender points on your body. For me I saw just about every type of doctor out there before I was diagnosed with fibromyalgia. To me it would make more sense to do the one blood test (MF/a) verse all the numerous blood tests, scans (MRI’s, CT, and PET) and God only knows all the other tests that were run. This was back in 94 when I was diagnosed. I hope that it is an easier process now for you. The main symptoms is the wide spread pain, fatigue (or exhaustion on some days) brain fog all of which gets worse with physical of emotional stress. Over doing it will cause a flare and sleep is unrefreshed leaving you tired and in pain. Not a fun diseased or illness to have.

[JayCeon in reply to Sarahvit]

Hi Sarah and Tigger67 - as Hazel stated: there is no test for fibro.

The EpicGenetics blood test (you're right: FM/a) checks for a certain cytokine/chemokine profile, but this was only based on a few small studies. So was never accepted by anyone else. That got worse last year, when it turned out that they were advertising the (expensive) blood test saying that people could then help in a clinical trial to see if a BCG vaccine can help fibromyalgia, altho they had pretty much given up the idea, quite a scandal, bringing more discredit, added to the fact that the BCG vaccine wasn't ever supported by anyone else either: Much ado about nothing.

Also both these whims came before COVID, had to do with other diseases.

Similarly the tender points test has long been ditched as unreliable.

So it's back to the hard way: If you have the main symptoms (see Hazel's post) the scans have to be done to check for anything else....

[Sarahvit in reply to JayCeon]

I herd about the other study when they were looking for test trial aka Ginny pigs but the study wasn’t reimbursing for travel expenses so never signed up then lost the information and never herd anything about the outcome of the study. You are right that study was looking for test participants back in 2018. I got an email about it while traveling by train to Devil’s Lake ND in June of 2018.I know there has been negativity about the FM/a test but it still gave me a sense of proof on paper of fibromyalgia. I don’t know what the cost is for the FM/a test but I’m sure it is not as expensive as all the other blood work, tests and Scans plus seeing all the other doctors and specialists I saw before I was diagnosed. What is the cost of the FM/a test? Insurance paid for it so don’t remember seeing the cost of the test.

[JayCeon in reply to Sarahvit]

I understand how it helps to see something on paper. I've just experienced something similar seeing my new diagnosis MCAS just on the doc's bill, altho I "know" it fits and she told me so (just that insurances don't believe in it and don't pay for it). However I've seen it being devastating for people diagnosed with fibro, but not getting enough points on the FM/a test...

The test costs >1000$. Of course you're right that this isn't as expensive as the other tests. That's the reason Medicare etc. pay it for. The problem tho is, that what the other docs look for still might be there too, so needs to be done anyway. This is the 4th main one of the ACR 2016 criteria, that fibro exists independently of other conditions that may overlap.... But for the insurances it's not important for you to sort our all your problems, they're happy if people stop getting further tests done.

[Sarahvit]

I had the FM/a test done as part of a study that was being done by EpicGenetics to test their theory that the COVID-19 virus 🦠 causes fibromyalgia. They had a local lab send out a phlebotomist 👩🏼‍⚕️out to draw 2 or 3 small tubes of blood 🩸at one draw that they send back to EpicGenetics in California. They run the FM/a test first to see if it come back positive for fibromyalgia then they test for COVID antibodies. Well for my test the kit got mailed back to the wrong EpicGenetics building and sat there over the weekend. I had answered all their health questions. This was when the vaccine first came out for Covid-19 and in the US had all those winter ice and snow storms which made getting the second kit slow coming and then getting another phlebotomist 👨🏻‍⚕️to come out that a couple of months pasted and getting the first Pfizer vaccine💉pasted. So I know I tested positive for Covid-19 but didn’t inquire how high my antibodies tested at.I’m not familiar with MCAS or what it stands for. I just briefly googled it mast cell activation syndrome a repeated symptoms of anaphylaxis. Allergic symptoms like hives, swelling, low BP, rapid heart rate, itching runny nose, itching, flushing, sweating, rash, eyes irritation, itchy, watering, trouble breathing, wheezing, mouth and throat itching, and swelling of lips, tongue and throat…..🤔hmm itchy, rash, flushing, sweating, (not checking my vitals when this happens) no hives, swelling but all the eye symptoms and all over itching do have asthma so feel like all the oxygen is taken out the air using an inhaler buts the oxygen back in the air. That is a missable feeling the symptoms of MCAS. Didn’t read the treatment but the symptoms of the “itchies” as I called it I take a Benadryl and that helps. What do you treat it?

[JayCeon in reply to Sarahvit]

You're replying to my post I guess? ;-).

Ah, now I'm getting it. When you said "2018" I thought you meant your test was back then, pre-COVID, which didn't make sense. Now I see it must've been winter of 2021(?) Thanks for this info, I hadn't seen it before.

I've now found an announcement of your trial here biospace.com/article/releas... and an article here journaljammr.com/index.php/....

I'm wondering if @desquinn can give some input on this...

"Conclusion: Individuals with FM/a test positive fibromyalgia have a reduced ability to produce IL-6 and IL-8 which play significant roles in the cytokine storm complications associated with COVID-19 infections. When screened for evidence of past COVID-19 infections, these patients experienced an extremely low incidence of COVID-19 infections based upon antibody testing, there were no mortalities and the level of morbidity was significantly below what has been reported in general populations."

This seems to refer to a subtype of fibromyalgia where individuals test FM/a positive, whilst the introductory sentence of the abstract claims far more recklessly: "The chemokine, cytokine interleukin deficiency disorder defines the immune deficiency disease of fibromyalgia and a reduced ability to produce IL-6 and IL-8."

You were then one of the 23 mentioned in the study that were asymptomatic, so didn't realize that they had had COVID-19. It then seems according to the study claims that you were asymptomatic due to the fact that your body makes less pro-inflammatory cytokines.

MCAS: Thanks for your interest. Actually my most debilitating symptom is extreme fatigue, heaviness, far more than from FM, and a lot of other strange small ones (e.g. burnt tongue tip feeling, nausea). I've managed to decrease these other symptoms by taking an antihistamine, 10 supps, breathing exercises, cold showering, lowering histamine in my diet (a tightrope walk). Now for the fatigue & pain I'm having surprising success with acupuncture from a Chinese doc (after "Westerners" having flared my fibro with it).

[desquinn Partner Volunteer FMAUK Trustee in reply to JayCeon]

Think I replied at the time of the covid / epig study and was not impressed. IIRC it was observational and had other aspects that would need drilled into. And apart from the previously raised questions about their previous approach I do have concerns about research that tries to "hang its hat" on many things.

[Sarahvit in reply to JayCeon]

Yes I was replying to your post for some reason it didn’t post right. The 2018 was the study of treating fibromyalgia with a vaccine up in Boston. I don’t recall what the vaccine was but this was pre Covid-19. I got the email about it when I was traveling by train 🚂 to Devils Lake ND. I’m in South Carolina and the study didn’t pay for the travel expenses so that was why I didn’t get involved in that 2yrs study (if I remember right that was 1 vaccine 💉then the second one was a year or 2 later) I never herd anything in regards to that study. The FM/a test/study was Jan/Feb 2020 after Covid-19 outbreak and when the Pfizer and Maderna vaccine became available.

Yes I herd about having fibromyalgia is the silver lining that fibromyalgia reduces the risk of getting a bad case of Covid-19. I haven’t read your links to the articles because I didn’t want to loose this site.

I can relate to the extreme exhaustion thing as when it is bad I describe it as the life force energy being zapped out of me. There was this video game 🎮 my husband would play and when his little character would die it would slow down turn around and go limp as he fell to the ground and die. It is way to easy for me to feel overwhelmed because of the cognitive problems I have. Thus remembering things. It is hard to stick or remember to eat this and not that, what foods have what properties for decreasing histamine in the body. Or decreasing inflammation in my body. Which is what I need. Feel like everything is inflamed. I put tummic (seasoning that has anti inflammatory properties in it) on everything. I need to vent here about the frustration with spelling! 😡I tied of seeing that stupid red squiggly line every time I try to spell a word. One of the most frustrating things that I deal with and when speaking I’m grasping at words trying to figure out the word to communicate what I am trying to say. This makes it even harder to say what I’m trying to communicate. Okay rant is over.