I got the results of my FM/a blood test. I called and although they have mailed me and my doctor the results the lady in the lab gave them to me verbally over the phone. With 50-100 being indicative of fibro my score was 96. I knew I was pretty messed up, and I guess I am. The lady asked me "how do I do it" over the phone. For those of you who read my initial posts about the tests I guess I am extremely low in IL-6, IL-8, MIP-1a and MIP-1a, as far as cytokines and chemokines go. At any rate I will definitely be asked to join in Dr. Denise Faustman's clinical trial for the BCG vaccine for fibro at Massachusetts General Hospital as soon as the FDA approves it. Just hoping I don't have to go 3000 miles for the vaccine. Los Angeles would be so much closer for me. ooxx
The FM/a test....I got my results. - Fibromyalgia Acti...
The FM/a test....I got my results.
There is no blood test for Fibromyalgia. Sorry xx
Respectfully, I think what you meant to say is that "there is no blood test for fibromyalgia that I know of at this time". I think you should read up on the FM/a test. I can give you several links to try. This is the closest theory I have researched and I have done a lot of researching. At the very least it is very indicative of your blood proteins being low and totally out of whack. There are so few studies being done for fibro, and I for one sure appreciate any work being done and it just so happens that I believe that there is some substance to this one......therefore I am willing to participate.
Here is a link to a Reader's Digest story about one gal that kind of gives you an idea of what's going on. I also have links to medical studies that have been done.
rd.com/health/conditions/fi...
Interesting to read she also had an underactive thyroid which gives the same symptoms, have to wonder if she was under-medicated as most people are.
I have an underactive thyroid and found out in the early 1990's but didn't get the full blown affects of fibro until about 2008. I am on Synthroid for my thyroid and it has been under control for many years. About the only affects of the underactive thyroid I noticed was tiredness....not the severe pain I'm in now. But that's just me. I think this new theory about the blood proteins is that fibro is auto-immune, which hasn't been proved yet.
So how's your FT3 level ? What is your Levo/T4 dose ? - and are you converting well ?
Hi, I'm not sure of FT3 level. I take 1.0 Synthroid and tsh is about 2.3 on a scale of .5-5.0. I know a lot of people think they should be below 1.0 in that range. I tried to go up on synthroid at one time and got rapid heart palputations so that was a bit much.
Really important to know your FT3 level as that is the most important result to monitor as it is the Active thyroid hormone and needed in every cell of your body. The Synthroid/T4 you are taking is like a storage hormone and has to convert into T3.
Rapid heart palpitations can also be caused by Low Ferritin or Folate - both need to be mid-range. Also B12 needs to be around 500 and VitD in the US around 60 + When these nutrients are optimal then your thyroid hormones will work well - the ones you are taking and your own.
Have you had your anti-bodies tested - to rule out Hashimotos ? Anti-TPO and Anti-Tg are the ones that need testing. There is so much you can do to help yourself should your anti-bodies test positive. There is a Forum for thyroid sufferers here on HU ... thyroiduk.org Lots of helpful people sharing their knowledge and advice. We even have a member who is a Research Analyst and posts the most up to date research they are involved with ...
A TSH around 1 is usually suggested - but it is where you feel good that is more important .. Once you are taking thyroid hormones the TSH becomes less relevant as the feedback loop to the Pituitary carries different information - ie - that there is thyroid hormone in the blood 
Years ago I had my ANA test and it was normal. My daughter had a pretty high ANA and she has Vitiligo. She suspects we both have Hashimoto's thyroid.
The ANA test just picks some auto-immunity but not which one ! So the Anti-bodies I mentioned above TPO & Tg are the ones that need testing to rule out Hashimotos ... I am sure you always keep copies of all your test results - so you can check what Docs think is normal - and also check what has been missed ! Normal usually means - in range - but it is where you are in the range that is so important ...
if you wish to click onto my username you can see that I am not a health professional - but someone who has travelled the road to wellness over many years ... and as I have mentioned before in other posts - learning from others who know more than me ...
An elevated ANA can also, be indicative of Lupus. Has that been considered? Symptoms are very similar to Fibro. I'm in the UK as far as I know here, there is no test for Fibro. But I'm not 'up' on everything. I was diagnosed 25 years ago. And they just went on symptoms. And tender points. My ANA was elevated in the beginning and they said I could have Lupus. I, waited a long time for an appointment at the Lupus clinic. By then, my ANA was in the normal range. So, they diagnosed Fibro. My thyroid is normal. Having had repeated tests. They do a full blood count here. But you have to research yourself what the result is of each thing means. At the moment, my sodium is very low. I have, many other conditions as well, and am on a lot of medication. I'm virtually bed bound now, due to the amount of pain I am in. And, on morphine.
I had my ANA checked years ago and it was normal. My daughter had an elevated ANA and she has Vitiligo. Some of the symptoms of Lupus are the same but some aren't. I've never had the rash either. We probably both have Hashimoto's also but haven't been tested, just for hypothyroid. If this new vaccine works I think it will prove that fibro is auto-immune.
Oh, I am bedbound, too, many days due to pain. Praying we all find relief soon. xxoo
As you seem to do so much self reserch have you looked into CBD oil for pain and lots of other symptoms too? It legal here in the UK. Different USA counties have different laws but check it out.Its wonderful stuff IMHO. I have reduced my Morphine by 100mg so far
I use half and half CBD and THC cannabis. Sometimes it helps me sometimes it doesn't. I have it in many forms. Under your tongue tinctures, smoking, vapors, etc. It is legal in my state.
Hi there its nice to meet you may I just give you the heads up on one of FMAUK guidlines dealing with medical help and information.
Guidelines of FMAUK.HU
1. Members posting on the site should not be assumed to be health professionals
2. In posting about health or medical information outside of your immediate personal experience, show a clear distinction between personal experience or opinion and evidence-based information and be careful to not present information outside of your immediate personal experience as fact unless you can back it up with reputable evidence based information sources.
You may find the forums guidlines here
healthunlocked.com/fibromya...
I feel we have to tread very careful when offering help and support to others. It could be misconstrued that we are medically trained when offering such in depth opinions. I hope you have a pleasant day
Momo
Thank you for your response. I appreciate you are a very busy lady. Whenever I wish to know more about anyone posting - I click onto their username and read their Bio's - and if I have time - some Posts and Replies. That usually re-assures me about the people with whom I am communicating and gives me some idea of their credibility.
Everything I post is based on experiences - and as mentioned here before - what I have also learned from others who know more than me. It is well acknowledged on Thyroid UK than many of us are better informed than many Medics - sadly.
Thank you for wishing me a pleasant day. I wish you the same. I have just finished taking a yoga class - a first after the Summer Break here in Crete - so yes it is - yikes ! I started teaching at 65 some 7 years ago .... Now off to do my lengths in the pool - completely pain free - such joy.
I sure will as I am not getting any younger....uurrgggh. My fibro is getting worse as I age.
Best wishes dear WorldOHurt
😊🌸🌿🦋
I hope you get the trial vaccine in California.
Take care. Abundant blessings sweetie.
😊🌸🌿🦋🤗💗😘🙏
Thanks fellow USA'n.
Welcome sweetie xxx
We don't have any of that in uk
No you don't, but if this works for me you guys in the UK will sure want to hear about it I think. xxoo
I just read that people in the UK can have the test. Now, how and when I have no idea??
I think if they can it costs a lot of money and not on NHS plus the reliability hasn't been researched or any credible papers about studies on it, so unlikely this would be recommended by NICE or any HCP. desquinn
That's true. The blood test was over 900$ U.S. but both my government insurance (Medicare) and my secondary ins. paid for it. It is a clinical trial that is based on a few studies that have been done and published. If it works like they think it will you guys in the UK will surely have access to the vaccine. I know there will be one vaccine and a booster. But exactly how long it will take to publish the results of all of the volunteers I have no idea.
Yes research can take years and the UK usually like to see a few research papers before committing to things plus NHS is very unlikely to cover this even if approved due to the lack of funding it has at present. I took part in a DNA study here in the UK by Kings College London they took blood over 4 years ago and no results of study as yet! I think the UK will be using the ACR 2010 criteria of diagnosis for some time moving forward until more funding is available and/or interest in researching Fibro heightens.
I know that if my insurances hadn't paid for the blood test, I would have forked over the money. But many people can't afford that kind of expense. I think the vaccine will be relatively cheap if and when it comes available to the public.
Fingers crossed it will be and also studies show efficacy as this would be a breakthrough to help future diagnosis and timely treatment. Again the modified BCG Vaccine would need research studies for this to be available too which may benefit future generations as cost must be also debated in parliament. I mean we haven't even got the Chicken Pox vaccine widely given here as yet like USA, Australia and other places due to cost/research I assume. It's hard for the people suffering to know that all these things take time but if not researched properly and people put at risk this is not right - so procedures must be followed it seems ....
That's one of the reasons I am volunteering for the vaccine. I would like to find relief before I croak....and believe me some days I feel like I'm going to. I'm almost 72 yrs old and don't have all the time in the world to wait for government processes to take place.
In my 40's so there's still hope I suppose
I don't want to be given, "False Hope", though.
You have to be careful with words. 🤔😏😔
It's fantastic that you are participating in these trials. Thankyou. Xxxx
Sending love and hugs your way. Xx
It won't be long now that I will be able to give everybody a report on whether it works or not. I just heard last night that the clinical trial has been approved by the
FDA.
I did get a bcg jag twice in my life would it be the same jag?
No, it's a different strain of the BCG. They've modified it somehow.
All of my symptoms from all of the illness I have relate to fibro . I have Sjögren's syndrome, under active thyroid, depression , CFS and arthritis in my hands .... all of these have the same symptoms as fibro ...... and a blood test would probably add up to the same results for the fibro blood test you got done ......
Also since my stroke I have most of the symptoms but intensified .....
my opinion for what it's worth is that fibro is an accompliment to other illness xx
They did a study where they tested the blood of RA patients and Lupus and Fibromyalgia and the fibro people scored much lower in the specific cytokines and chemoines than the other two.
I am not sure what tiger illness is??
Just edited that what I said...
I meant that Fibro doesn't come solo ... it also comes along with another illness.... x
That may be true. We shall see.
I remember a doctor saying to me that Sjögren's usually comes with another similar illness ... but As you say it may come to fruition soon
I think you may have mis-understood or I may have not written clearly - sorry. I find swimming in a warm pool beneath the Cretan sun a relief from pain. Swimming has been one of my favourite sports for over well 60 years so it comes quite naturally and does not tire me out ... The matching painful points are all there still and more evident when having a massage !
Glad you have found something that helps - your jacuzzi bath sounds great. Sorry you found yoga painful - it can be difficult to find the right class/teacher. Have you considered Chair Yoga - there are some videos on YouTube 😊
I have femoral acetabular impingement in both hips and have had Trochanter Bursitis in both hips for the past three years - it miraculously lifted this June and my stick is back in storage !
Not sure I mentioned a miraculous recovery . Crohns - Hashimotos - B12 Deficiency - all have to be managed carefully to keep things at bay ... Interestingly I had the BCG vaccine at 13 and then went on to have gut TB - six months in hospital - 5 surgical interventions at 27. Many more ops for complications with Crohns over the years - decompression spinal surgery and an op on the hip area to remove a benign tumour as well as opening and pinning back the TFL - Tensor Fascia Latta. Hopefully after 13 ops that is it 😊 I continue to read and learn ...
It was the trochanter bursitis that lifted and made walking easier - the arthritic spurs in the joint remain - they cause the impingement. Think Andy Murray has a similar problem ! So even fit athletes have issues to overcome 😊 Apologies - must write more clearly ...
Blood Test Results
I got shouted when I was parking my car in disabled bay
FM/a blood test 
Sharing my Good News despite the suffering! I got my Blue Badge! 5/11/11 was assesment and 2 days after accepted
