No Fibromyalgia Diagnosis Yet

SMHGTX

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Hello Everyone,

First, I need to say that I am so very grateful to have found this site! I'm a 57 year old female from South Texas, US.

I have not been diagnosed, but my doctor suspects that I have Fibromyalgia. I had been experiencing migraines for years and in 2016, after my father's death, I had, what the neurologist at the ER explained was a TIA (a mini stroke). I was put on an aspirin regimen and medication for my blood pressure. I was referred to another neurologist, and after seeing two of them, was told I did not have a TIA but a very strong migraine. After a battery of tests, I was provided medication to help when I felt the smallest of the migraine symptoms, such as phantom smells, or odor auras. During this time, I began to experience things I never shared with doctors because I thought it was part of the TIA/Migraine. I would be walking, and my left leg would fall asleep and then get "tingles" as if it were "waking up". I often had to lean on the cart in a store because I was afraid of stumbling. I did fall in a line to vote because my leg fell asleep and was so embarrassed and mortified at the offer to call 911 for me.

I used to enjoy yoga or walking or shopping, but it became too painful. Everything wore me out. Everything became painful. I was told it was because of my weight. That if I lost weight, it would be better. If I lost weight, my blood pressure would come down. That if I lost weight, I would be healthier. While I am absolutely certain that this is true, I felt it was dismissive of my symptoms.

At the beginning of the pandemic, my company offered a work from home program. I was selected and so grateful. At work, I was sitting most of the day and unable to leave and walk around. When I did get up, it was as if my body would not "unfold" and was "frozen" from the hips down. At home, I was able to stand and work, but not for long, but it provided movement and relief.

In 2021, I started experiencing full body spasms. from my neck to my toes, mainly on the left side, but occasionally on the right. My limbs falling asleep became a daily event. Then multiple times a day. I went to my doctor's office for an appointment and the regular doctor was out that day, but a new doctor had joined the group. She was amazing! She explained that she believed a few things were going on. She took blood and urine samples as well as X-rays. She told me that I had spinal stenosis, an inflamed sciatic nerve as well as arthritis in my left hip, left knee and left ankle and foot. (arthritis due to broken bones from a fall in 2013). I had the beginning of arthritis in my right hip and ankle. However, when she pressed on my left collar bone, I crumpled into a chair. She said, "You are presenting like many of my fibro patients". She wanted to try Gabapentin 100 mg and Tizanidine 4 mg. The Gabapentin was increased to 300 mg at the next visit, and I was given a steroid shot. She also provided a script for Prednisone 10 mg. She said it helped many patients, however, it would cause weight gain. I didn't take this as I had been told I needed to lose weight by so many other physicians, so I was afraid. She wrote a script for a blue tag for my car, to help with parking. I felt guilty having it, so I never turned it in. The blood work didn't show markers for MS or RA. I have Rosacea, but she doesn't believe this is linked to Lupus.

The past seven months, since that visit, have been an escalation of symptoms. Some I believe from weather changes, some from stress. But whatever factors, it has made things very difficult. I live alone, my kids grown and on their own. It is hard for me to keep up with the house. I order groceries to be delivered. I do pick up orders at other stores but have to take my purchases inside in phases.

A few days ago, I found this forum and the test. I cried when I took it, because every question was as if it were a page out of my life. When it said that I had the scoring of a person diagnosed with Fibro, I cried even more. I've spent the past few days reading the posts on every thread. I cried tears of relief. I realized I wasn't going crazy. That while, yes, my weight wasn't helping, it wasn't the cause. That while I had arthritis in certain joints, it wasn't the source of the problems.
I have been using CBD edibles (half doses) along with the Gaba and Tiz (half dose). This seems to help when laying down and I do get at least six hours of sleep.

In January, I contracted Covid 19 and was very ill. I became dehydrated and cannot seem to get that back on track, no matter the IVs or fluids I intake. My skin in very dry, my hair loss (while it has always been a problem) has become more of a problem than ever before. Nausea and vomiting have become almost a weekly problem since January as well. The brain fog and depression prevent me from completing certain tasks. I try to overcome this with sunshine and fresh air as well as eating fresh fruits and vegetables. But lately, it seems as if the bad days are outnumbering the good ones.

I have noticed a pattern in the symptoms, the pain is pretty much always there, but manageable with ibuprofen or acetaminophen. Then I will have a flare up of Rosacea, then twinges of a headache/migraine, then rolling muscle spasms. These will all last about 4 - 6 days, then I will get relief and feel so strong. So, I take advantage of those days to get done what I can, and probably push too hard. I have noticed that if I keep socks on my feet, the pain there isn't as bad, and I can walk. I have used a CBD salve on my hips and have tried to put it on my feet, but unfortunately, my body doesn't let me bend certain ways anymore. I use sprays like BioFreeze and Icy Hot. Somedays I feel as if I should bathe in it!

I am seeing my doctor this week and will be taking the print-out of the test results with me. For so long, I thought all of the symptoms were related to weight issues. Or that I was making them up, or that I was losing my mind. Much like when I had a hysterectomy in the mid '90s due to endometriosis and uterine tumors.

I apologize for the lengthy post, but I am just so grateful to have found that I'm not alone.
The posts of others have helped me more than you know, or maybe you do. I feel as if all of the symptoms can be tied together.
The random pains, the muscles cramps and spasms, my arms, hands, legs and feet falling asleep, the sleeplessness, the forgetfulness, the hair loss, the GI issues, the exhaustion. All of it part of 1 thing and not so many separate issues.

Thank you again.
 

JayCS

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All of it part of 1 thing and not so many separate issues.
Hi SMHGTX, and welcome! Good you're beginning to see it all clearer. Very understandable, length isn't a problem.
It sounds like your new doctor is knowledgable and helpful. And I'd agree it sounds as if there are several things going on, not just one, but that fibro may be one. Finding symptom patterns yourself is a great way of taking more control, trigger hunting and finally finding things that help. There are quite a few things on your list which aren't core symptoms of fibro, altho they are on our site test which seem based on the ACR criteria. It can make it easier to find the "rule" (syndromes, diagnoses) and also the exceptions, but if I hadn't treated each symptom for itself I wouldn't have got all the small ones down.

I was confused the other day when someone said "I did the test", because there isn't actually really one, which we all say all the time.
Now you say "your forum and the test" I found via search engine that our site has a test here, which I don't remember finding previously, altho in this single-post thread I've pointed to our resources. So thanks for pointing us to our very own test! And this goes to show that none of us here are reading the site regularly... Praps someone (@Dooi?) could let us know when there's a site update?

For a laugh I did the test, and scored only 4 on the WPI- and 8 on the SS-part. Which according to the criteria for scenario B means I haven't got fibro, altho above it says I have: Something seems programmed wrong there (praps 8 instead of 9 on the SS-part?).... Then I did it again and ticked off all localized pains I generally had before getting them to zero thru acupressure: 19 WPI and still 8 SS.

Copied over from my post on @Philippa's thread on "the test": The problem with this test is that first other conditions need to be excluded and if they have and you have a lot of pain all over, we call it fibro, for want of a better name and lacking much idea about causes and treatments....
 
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sunkacola

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Greetings, SMHGTX, and welcome to the forum.

You will find information here, as probably you already have, and many supportive and helpful people. Many of us have been through some or all of what you have experienced, and this kind of support is valuable.

To reply to a few things you mention:

While I can understand why these doctors are saying this to you, to be told that everything will get better if you lose weight is a form of being dismissive, as you feel it is, because there is no guarantee that weight loss will help with everything. Some things are a given: if you have knee problems or arthritis, or some other issues, then weight loss is proven to help. But not for everything. The most important thing here is not exactly how much a person weighs, but the general health and mobility of that person. If you are active, exercise at least 5 days a week in some form, and eat a healthy diet then your weight is not really the issue. If you are overweight to the point of being unhealthy, then weight loss as part of your more healthy living would be a good idea.

There is no test for fibromyalgia that can be called to any degree useful. The pressure point test has been debunked because it is inaccurate and unreliable. Any written test is also unreliable. This is because fibromyalgia is an umbrella term encompassing so many symptoms that just answering questions or telling your symptoms doesn't diagnose it. If, however, you have symptoms associated with fibro and for all of them tests have been run (meaning blood tests, MRI, CT scans, whatever is appropriate) and none of them show the other things that could be causing the symptoms (such as lupus, MWE, MS, arthritis, and so on) and the doctors get stumped as to the source of your problems, then they call it fibromyalgia. This doesn't mean the diagnosis is useless, just that it cannot be determined by one test. It sounds as though you have had many tests, so the doctor who said it could be fibro was not off the mark.

Steroids are very dangerous, and I always advise against them entirely, so you are wise to stay away from them. They will definitely not help in the long term and do not in any way fix what is wrong. Gabapentin has strong side effects for some, not for others, as is the case with all pain medications. The problem with taking pain medications as a response to fibro is that they do nothing but mask the pain. They do not address the whole body as an organism, which is what fibromyalgia requires, so ultimately they are not useful except as a way to manage the most extreme days.

If you have had Covid, I suggest you research "Long Covid" because some people who have had Covid will have long term effects from it and this might be part of what is happening to you.

CBD is useful for many people. As for your flexibility, that is something you can work on when you feel up to it. Stretching just a little bit each day can build up to a lot of difference. A gentle Hath Yoga program is great for this and you can find them online for free.

I have written a post with all of the information I have amassed and the things I have tried that can change how your body functions and thereby change how you experience fibromyalgia, if that is what you have....and even if you did not have fibro these things will help. I recommend you read it and start immediately implementing whatever you possibly can so that you can start on the road to feeling better. You don't need to do it all at once, but you can get started today.

Feel free to ask any questions you have here, and to moan and vent as well if that is what you need to do. You are not alone.
We are here for you.
 

JayCS

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There is no test for fibromyalgia that can be called to any degree useful.
It may be strange for people doing the test on this our own website as mentioned above to come on the forum and be told it's useless.... Praps that page should be re-phrased somehow?
(Can everybody see that I'm hyperlinking above and twice here? (And quite often actually...)
Or should we signpost that, e.g. with something like (<- click on that) )
 
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sunkacola

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Well, I did not look at the whole thing, because it started demanding that I fill it out and I don't have time for that.

I don't think that an online fibromyalgia test is all that useful, though. It only can indicate that you COULD have fibro.

The thing is that you may have all the symptoms and answer all the questions for it to say you had fibro, and actually you have ME or Lupus, MS, or several other things, or even more than one thing, that is diagnosable, and not have fibromyalgia.

That is why I always say -- do not ever think that an online test will diagnose you. Don't think that a doctor can diagnose you just by hearing what you have to say. The only way to get a true diagnosis is to have all of the tests run for everything that could be causing your symptoms. Only if all of those tests fail to give a positive, or if one of them does but your symptoms go far outside of the typical symptoms of that disease or condition you were diagnosed with, can the diagnosis of fibromyalgia be accurate. I always recommend people get all the tests to find out. That means blood tests, maybe MRI, X-ray, and so on.

Now, of course, if you can't or don't want to do all that you can just assume you have fibro, but you won't know, and if you have something else and it goes untreated that could be disastrous.

That is why I say an online test is worthless, at least in terms of diagnosis. It is useful for putting all your symptoms together for your own perusal, and perhaps to go to a doctor and say the test online indicated you have fibromyalgia, although most doctors won't take that seriously.
 

JayCS

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I fill it out and I don't have time for that.
Only takes a few minutes, but still unnecessary, agreed. But even stranger it being associated and identified with our forum.
 

sunkacola

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Probably it was put there when the forum was first started - well before I came to the forum, so I don't know who put it there and I have not discussed it with other moderators but if you think it is important, I will.
 

JayCS

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put there when the forum was first started - well before I came ..... have not discussed it with other moderators but if you think it is important, I will.
Short answer ;) : Important, but not pressing. It's a good test, but I think a few caveats all round it would fit to & increase its soundness.

Arguments: I don't think it's pressing, now I've found a comment on Sat, 03/18/2017 about it showing that - like you say - it's not new.
(David said "The online test works well for people learning about fibromyalgia or that may be new to diagnosis." on a page linking to it).
Even if you'd decide to put a qualifying comment up front, some people would still come on here saying "I've done the test".
Now we know that it's "our" test they're referring to 🤯, we can now try to remember not to say "there is no test" as we have been doing.
On the other hand people we won't be able to differentiate it like this for people who don't come on the forum.
And it is a pretty good test, well-based, so I think it's good that it's there, but it needs a few caveats all round.
 

JayCS

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if you think it is important, I will

I (we?) need to stand corrected:

According to the 2016 ACR criteria:
"Fibromyalgia is diagnosed if you meet all 3 criteria 1-3, independent of whether other diagnoses contribute to these
symptoms
. This is new: FMS diagnosis used to require that there be no other diagnosis to explain the findings."
It is no longer a "diagnosis of exclusion."

So in short, they are saying if we have widespread (WPI) and severe pain (SSI) longer than 3 months, that is fibromyalgia.

That to me means that we can actually "self-diagnose" using ▶️ our online test. What we still need to do IMHO is get everything double checked.

(By the way I've also found ▶ a post from @Dooi introducing the online test in 2017, so I also definitely need to
take back having asked for notification of new things on the site as well as re-phrasing the online test... Whooops...
And also embarrassingly, it is pinned to the top of the subforum on "Do I have fibromyalgia? in which this thread is written...")
 
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sunkacola

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So in short, they are saying if we have widespread (WPI) and severe pain (SSI) longer than 3 months, that is fibromyalgia.
Now, that is something with which I absolutely cannot agree, and I think anyone or any site or place stating that is making a dangerous mistake.
There are so many other things that can cause widespread and severe pain for over three months. Lyme disease, MS, arthritis (of many different kinds), ME, cancer, lupus, anemia, and that is only to name a few of them. So relying on that as a criteria for "diagnosing" fibromyalgia is very unwise.

As I always say -- get the tests to rule out all of the other things that could be causing the pain and other symptoms.
If you don't you are running the risk of assuming you have a condition that cannot really be effectively treated through medical intervention, and if you actually have something that CAN be treated effectively, you are missing out on that.

Worse yet, if you have something life-threatening and you do not discover it due to assuming it is fibromyalgia, you may not find out what it really is until it is too late to save your life.

Get tested. Get tested. Get tested.
 

fimi

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I agree @sunkacola, testing is the way to go. I look back now and although I still think my diagnosis could have been made a lot sooner, I'm grateful for all the tests that rule out all those other nasties. Fibro, as we all know, is far from easy to deal with, but I can at least rest (or at least try to), knowing I've ruled out other things. It's just a shame it can be such a long process that takes its toll on the sufferer😥
 

JayCS

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Now, that is something with which I absolutely cannot agree, and I think anyone or any site or place stating that is making a dangerous mistake.
There are so many other things that can cause widespread and severe pain for over three months.
Not quite: As I said, they are saying if other things are causing this, you don't only have FM, but you also have FM.
So still of course further testing and thus not at all a dangerous mistake.
Anyone seeing it differently is arguing with the world leading experts in fibromyalgia, the American College of Rheumatology, since 2016 (the ones who introduced tender points in 1990 and discarded them in 2010), as well as the American Pain Society 2019.
They are also contradicting the online test of our fibromyalgiaforums website.
Germany is behind by in 2017 saying that the 1990 & 2010 criteria may be used for diagnosis, but they are re-working as we speak.

I think it is good to give FM a fixed place by no longer playing it down as a vaguer "diagnosis of exclusion", so defining it "negatively," but instead defining it "positively" with a fixed set of criteria, and at the same time making sure everyone realizes we can have many additional conditions, even contributing and these need to be tested for.

Come to think of it, this development even supports the need to "get tested!" even more, since a fibromyalgia diagnosis now definitely doesn't exclude anything else, whilst before patients/docs could say: "With fibro, I don't need to look further". Now they do!
 
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fimi

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mmmm...got me thinking there @JayCS ...all the testing yes of course, but I guess we also need some kind of marker (3 month WPI /SSI pain) to piont towards fibro ...
 

JayCS

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all the testing yes of course, but I guess we also need some kind of marker (3 month WPI /SSI pain) to piont towards fibro ...
Yeah, the testing is to check for non-fibro conditions - as we know you can't test for fibro. These 3 are only the criteria for fibro.
If we meet these 3 criteria, we have fibro, whilst the 4th "criterion" is actually the quote above: the need to check for co-morbidities!
 
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