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fibromelon

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Hello!

I was diagnosed with fibromyalgia about a month ago and the way I was told has kind of been bugging me.

For context: I'm 22 years old, I've never been too active, I walk/jog a few days a week (when I physically feel up to it) and I've never had any serious medical conditions before. I've been seeing rheumatologists for almost 2 years now and test after test they've failed to figure out why I'm in so much pain all the time (and 'sick' in other ways as well ex: stomach issues, headaches, dizziness, weight loss/gain). In my most recent visit, my rheumatologist told me she thinks I have fibromyalgia because patients with that have a lower tolerance to pain than average and, apparently, I fall into that category. She said I should try more exercise, anti-depressants/therapy or as a last resort, medication.

I was so taken aback I almost started crying right in front of her. I've dislocated my knees/fractured bones and gone to school/work right after, went to work for a full month with severe stomach cramping and pains and have powered through weeks of chronic migraines with no relief without missing a single day of work/school. And this doctor tells me "well you have a lower pain tolerance than average, and we can't find anything else to explain it, so it must be fibromyalgia". I never complain about pain, I just do what I have to do and spend my free time curled up in bed!

Despite the doctor's advice, which I followed, I've been sicker than ever these last two weeks, I even contemplated going to the ER (but I didn't, I figured there was nothing they could do for me anyway).

I guess my question for this forum is, am I overthinking this? Am I being too sensitive about this diagnosis or something? How did you feel getting your diagnosis?
 
she thinks I have fibromyalgia because patients with that have a lower tolerance to pain than average and, apparently, I fall into that category. She said I should try more exercise, anti-depressants/therapy or as a last resort, medication.

Hi and welcome. Sorry you were given this dx in such a backhanded way.

the "lower tolerance to pain" thing as absolutely bupkis. there is nothing wrong with your tolerance level, in fact, it sounds to me like you have a pretty high tolerance. The thing with fibro is that it can make things hurt far more than they should - a minor bump into something can sometimes illicit an extreme pain response - not every time, but sometimes.

There is an online questionnaire/test you can take on the home page, here: Fibromyalgia Test (look on left side of the page for the test link)

Stomach/digestive issues are fairly common with fibro, but it does tend to be different for each of us. Tracking what you eat, and how you feel can often point to trigger foods...
Sunkacola has a very helpful post with different strategies for managing your symptoms here:

I was not even actually told about my dx, i found it listed on my clinic patient portal... was looking for a dx date for something else, and found fibro listed in my "conditions & diagnoses" page.. i was like, huh, will you look at that... i had suspected for a while, so the listing did not really surprise me much... however, not actually being told by the doc was kind of odd...

Dont overthink things.. but do take a little time to digest it.. and take heart, you are not alone. There are plenty of us here that can help you with suggestions of things to try, offer moral support, and just listen if you need to vent.
 
@fibromelon , welcome to the forum. I hope you find this a helpful place. Members are here to help one another, and offer support and experience and information. You are safe here, because anyone who is rude or hurtful doesn't stay here very long.

It really irks me when I hear someone saying that a person "has a lower pain tolderance" and that means they have fibro. As stated above, this is 100% false. The truth is, most of us have a higher pain tolerance than the average, because we manage to live our lives while in pain that would make many people curl up on the couch and not move.

My first suggestion is get a different doctor. First, that doctor knows nothing about fibromyalgia or they wouldn't have said that. Second, it was highly insensitive to say that to you. Find someone who listens to you and is respectful.

Read my advice post and start implementing as many things as you can. Go at your own pace, and expect it to be a process that takes time. By doing your own experimenting you can learn how to manage your own personal version of fibro and have a life. I know, i have done it myself and so have many others.

You are right not to bother with the ER. Most likely, you will wait in an uncomfortable chair for hours (because you won't be a priority), and by doing that will increase your pain and discomfort. Then, when you are finally seen by a nurse or doctor, you have at least a 50/50 chance of being dismissed or just told to take Advil or something. Or, they might even go so far as to view you are "drug-seeking", which would go on your medical record. Not helpful.

I also strongly advise that you see another doctor and discuss the various symptoms you have. You should ideally be tested for all the things that could cause the symptoms you have - stomach issues, dizzyness, and so on. To assume they are fibro without testing for all the other things that might be causing them could be dangerous. If no cause is found after some reasonable amount of investigation, then fibro would be a logical conclusion.

No need to despair. We are here for you all the way, every day.
 
She said I should try more exercise, anti-depressants/therapy or as a last resort, medication....
Despite the doctor's advice, which I followed, I've been sicker than ever these last two weeks...
am I overthinking this? Am I being too sensitive about this diagnosis or something? How did you feel getting your diagnosis?...
you have a lower pain tolerance than average, and we can't find anything else to explain it, so it must be fibromyalgia
"lower pain tolerance" is not a fibromyalgia criterion, but quite a few of us have it, as well as a low pain threshold. I think docs just can not imagine that there is a reason for the pain, although they can't detect it. So many fibro researchers and experts call it a "central sensitization syndrome" and "nociplastic pain", meaning the pain has no reason for being there, no injury, no nerve injury, but is there all the same. At least those docs would never discount our sensation as being real pain, other docs are even worse and do that.
However this doesn't fit to my experience of my pain at all, and there are quite a few others are like me, despite some studies saying many of us have low pain tolerance and low pain threshold. But I believe these studies are jumping to conclusions. If they cause pain to people with fibro and we react stronger than others that may mean that we have an as yet undetected reason for some baseline pain and that's the reason why something inflicted on us feels more painful than to others.
I've had various pains all my life from skin, back and gut. Scans and bloods have never been able to explain these pains, all three are completely "invisible". Yet they are not only pain, they come with a whole range of other symptoms.
And yet they have never influenced my way of living much. And I have been able to tolerate them and also minimize them. When my fibro full flare came up, my back and other local pains came up again more. And I've been able to again tolerate them and minimize them.

But fibro like these other issues is far more than a pain syndrome, in my case insomnia and fatigue have been a major part and pain has become a minor part if I pace well. At the moment I've also got my insomnia well under control. But neither helps the fatigue. My GI and all 3 of these symptoms are independent of one another.

So I think your rheum has misunderstood at least one or two things. What you've described definitely shows a high pain tolerance in the sense that you haven't let it rule you. But what she may have meant is a low pain threshold, meaning feeling pain before we normally would. However I can also well imagine that you wouldn't accept that either - I wouldn't.

Both however are no "diagnosis" and to me it sounds as if it would have been OK for you if she'd just said she thinks "you have fibromyalgia, because no reason for your pain can be found by known means"?
So it's not the actual diagnosis that you are irritated by, but by her inappropriately put reasoning?

As regards doing what your doc suggests and it gets worse: Many of us get this. I only started getting better when I realized that wasn't working and stopped doing it, which was after about half a year. The suggestions may not be wrong, in my experience, but finding our right way of doing it is essential.
Acupuncture done by one of my first docs and later again harmed me considerably. Only trying Chinese acupuncture 2 years later was helpful for my fatigue, which was a pain doc's recommendation however. But my acupuncturist makes sure I am very comfortable & warm, listens to my needs, is always there. The ones before did none of that and it was then torture during and for a day afterwards.
Another pain doc suggested Yin Yoga, which are 2-3 minute long stretches. Such length tears me apart. But if I make sure I do just short stretches, like all exercising, with appropriate breaks in between I can do them and they help.

So what I'm thinking is that you haven't found how to do the exercises in the right way for your body, generally right pacing / dosis of everything, is that possible?
Similarly therapy: It is difficult to find therapists for us that are empathetic and constructive enough. So it's important to switch early on if possible. I could and did so. Mine is a trauma and Gestalt therapist, whilst 2 normal and 1 pain psychologist didn't do much for me.

I'm not quite sure if I've got you right and could help you with my ideas, I hope so.
 
"lower pain tolerance" is not a fibromyalgia criterion, but quite a few of us have it, as well as a low pain threshold.
So....more on this discussion.

Of course some people have lower or higher pain thresholds or tolerance than "the norm", whatever that is, but that will be true in any group of people you can find. There are no more people with low pain thresholds or tolerances among folks with fibromyalgia than in any other group. I believe probably more people with fibro have higher pain thresholds and more tolerance of pain, because of what we experience every day and yet keep going, many of us holding down full time jobs or being single parents and so on. Part of managing fibro is acceptance of it, which allows much more tolerance for the pain we feel. But of course I have nothing scientific to back up that opinion as no good studies have been done on that to prove it either way.

If they cause pain to people with fibro and we react stronger than others that may mean that we have an as yet undetected reason for some baseline pain and that's the reason why something inflicted on us feels more painful than to others.
As for things hurting more to us than to others, I think this is only partly true, even if there is baseline pain. For instance, just barely bumping into something on some days will cause acute pain for me. Enough that in the past if I felt that much pain there should be an actual injury, but I never even get a bruise from it. I used to find large bruises on my body before I developed fibro, and not even know what caused it because I didn't notice it when it happened during my active day. Now on some days as I say it's the opposite. But only on some days! And on those days I am not necessarily feeling more pain otherwise. On other days I can bump something and hardly feel it, but end up later with a bruise just as I used to.

I think this may apply to a lot of people with fibro. Again, no proof of this opinion but it seems that way from what people, both those with fibro and those without, say. Certainly, my pain threshold or my tolerance for it never has changed. I am able to walk around and act "normal" when I am experiencing pain that I think would take many people down. I am able to withstand things that "normal" people say causes them pain, and not even feel it if it is a day when I am not hyper sensitive. the days that I will feel acute pain from bumping something do not seem to correlate with days I am feeling more pain in my body generally.

Anything can be true for any one individual with fibromyalgia, of course, and we all know that. But it's not often accurate to apply that as a general statement about most or all people with fibro, except as an unsubstantiated opinion, even if it comes from a medical doctor.

The suggestions may not be wrong, in my experience, but finding our right way of doing it is essential.
Very possibly true. A doctor can be right or wrong for any individual with fibro. That's why it is so important to do your own experimentation so as to find out what works for you.
 
personally, i think the terms "pain threshold" or "pain tolerance" should be tossed out.. just my opinion.

Pain is a very personal experience. It is going to vary wildly from one person to another. What one person considers a 2 or 3 the next person might call a 6 or 7 - try as they might, there is no real way of quantifying that.

I also constantly have bruises and not know where they came from, but also like sunkacola, there are days when even a small bump can elicit a severe pain reaction.. it just varies from day to day. the same bump that causes horrible pain today i might not even notice tomorrow..

so, as far as that goes, tolerance can be a changeable thing.

for me personally, i have "tolerated" many different injuries over the years.. drove myself to the ER a couple of times - once with a broken foot, driving a manual transmission pickup truck.. another time with a kidney stone causing problems...
got a nasty cut in my scalp once while up on a ladder, more than 20 ft in the air - I was calmer than my partner was about that one, LOL - climbed down the ladder just fine by myself, bleeding all over everything, myself included - scalp wounds are messy. that one netted 11 stitches.
But there have also been times when something relatively small, in comparison to the above, caused me more pain than it probably should have. Like a scratch by an over exuberant dog, or banging a knuckle on something..

I personally dont think I have any special tolerance level, or threshold, or whatever you want to call it.. It just depends on the day and how well I am coping at the time.

So, @fibromelon - dont let what that insensitive doc said bring you down. We are all different, and how we cope with pain will vary from day to day.
 
everyone has a different pain tolerance level - I usually describe pain as a number between 0 and 10 10 being extreme no one has a pain level of 0 we all have some base pain so between 1 and 10 is more realistic. this scale works well as it gives the doctor a view of how you tolerate pain - for me I have suffered from spinal problems for most of my life so am tolerant to some pain 3 to 4 at 5 to6 its becoming depressing and at 10 would describe a fibromyalgia flares that I experince However just because you have fibromyalgia does not mean you have low tolerance to pain and for a doctor to say that as you have low tolerance to pain then you mush have fibromyalgia is jusll silly - If I had a doctor that suggested that to me then I would walk out the door and find another doctor. Actually my doctor is treating me for fibromyalgia whioch is keeping most of the pain at bay but my neurologist is leaning more towards ALS but I am off to see a rheumatologist soon basically I don't care what I have as long as the symdoms can be managed. my previous doctor(?) just kept giving me codeine which never worked.
one important thing is that I used to wait for the bad days (flares etc) now I look forward to the good days!
 
Of course some people have lower or higher pain thresholds or tolerance than "the norm", whatever that is, but that will be true in any group of people you can find. .... But of course I have nothing scientific to back up that opinion as no good studies have been done on that to prove it either way.
Good points, agreed.
After having another look around, I'd say it's allodynia (pain from touch) that leads researchers to assume we have a low pain threshold, whilst them dropping the tender point exam shows it's changing and they now believe more and more we can have a low pain threshold, but it varies individually and in time. A few studies conclude or assume this.
Similarly hyperalgesia may be leading them to assume a low pain tolerance, but actually that shows "sensitivity", and not really "tolerance", so that distinction shows a 2nd confusion of terms.

The study stuck in my mind is Goebel's 2021 mouse study (leading them to believe fibromyalgia is autoimmune). This study is held to be "good" quality - however I don't think so, I think it assumes too much, including the low threshold and high sensitivity to pain (and also what they conclude from it outside the study is pre-mature, actually IMO far-fetched).

Added to this, the term "tolerance" brings in an even more subjective, psychological component, which feels unfair psychologizing by a doc if hasn't been agreed upon with their patient. Also as you said it is something that can be psychologically developed.
It reminds me of a cliché here about some men being wimpy if ill, as opposed to women being - having to be - stronger when ill. I think we can agree that that neither has to do with gender, nor with conditions, and probably believing someone is wimpy when sick is also an unfair presumption.
And on the hand it reminds me of the term people with fibromyalgia "catastrophizing" their pain / condition, which one or two fairly recent studies ascribe more to women than men. I'm also very careful with this term - my wife has tended to catastrophize my condition, but my holding against it/her has improved that.

I personally hardly ever have any of these (allodynia, hyperalgesia, pain sensitivity, low pain threshold, low pain tolerance, high pain sensitivity), I just experience that I sometimes have a lot of pain of many kinds, some which I can pretty well explain, and a lot of which I have well under control,
so I agree that as I said it's a question for anyone of us to think about if it appears to be one of these or not, not for a doc to presume.
 
everyone has a different pain tolerance level - I usually describe pain as a number between 0 and 10 10 being extreme no one has a pain level of 0 we all have some base pain so between 1 and 10 is more realistic. this scale works well as it gives the doctor a view of how you tolerate pain - for me I have suffered from spinal problems for most of my life so am tolerant to some pain 3 to 4 at 5 to6 its becoming depressing and at 10 would describe a fibromyalgia flares that I experince..
I very much agree with all of the rest, but to me it appears that pain scales show pain tolerance in a different sense, I wonder if you can follow me on this:
Like you I've suffered from my spine all my life, also skin, gut and other pains, I don't know what life is like without almost continual pain. But my pain scale is much more compressed.
My base pain is 1, like you say, even before fibro it may have been 2 or 3 for years though, until I managed to address those issues properly. Because of self-caring and working on my pain, my fibro base pain is 1, to me that's invisible = 0, but I'd think it wouldn't be to others, and my wife would banter that that should actually be a 3. At the other end of the scale 7 means pain makes me cry or loudly moan (like my spinal tap did), which I can tolerate well if that complete amount is only for an hour or two, no depression, also I can get used to it, or manage it better, so my tolerance can increase, whilst the pain level remains the same.
Whilst mental pain management increases my tolerance it's physical treatment, trigger prevention and supps, but also physical relaxation that decreased/-s my actual pain levels.
However as opposed to you/yours my fibromyalgia flares would be a 5, sometimes 6, only if they remain that high for hours and days (rather than varying from 4-6) can that press the odd tears out of me. Does that make me more pain tolerant? A 10 for me is like my first rheum joked when he heard where my 7 is and that 4 is (was) my normal "me screaming my head off and jumping out of the window".

Base pain of 1: When I asked my wife for the first time half a year ago, if she really doesn't have pain all the time, she replied No, she is usually not in pain, so that'd make hers a 0, not sure if you meant the 1 for fibro?


So is your pain scale really a measure of your tolerance rather than you pain levels?

Also is it really long being used to pain that makes us more pain tolerant (like I've also often presumed), and for all of us, or could the opposite be the case for some? E.g. depression growing (something I haven't had for decades and I assume makes me more pain tolerant?).

And is a more compressed pain scale a sign of high pain tolerance?
Or why is it that people say they can often have a pain of 10? Or sometimes even 15 of 10? Am I being soberly mathematical or are others catastrophizing? - All presuming we all know as docs too, that pain scales are subjective and probably also emotional. But I do see a tendency towards two types: Either like mine or like yours... Or is anyone's more extreme or in between?
 

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this scale works well as it gives the doctor a view of how you tolerate pain
The thing is, as has been mentioned before, it really doesn't tell the doctor anything all that useful except what the patient calls what they are experiencing. It cannot tell the doc how well you tolerate pain unless the pain you are talking about is something pretty well known, like say a broken leg. If you call that a 4 and are being honest, that tells the doc something. But only about your reaction to that specific thing, not your overall tolerance. With fibromyalgia there are a lot of different levels of pain. And I have heard from my doctor that some people have come into their office complaining of 10 out of 10 pain in that moment.

Well, if I called my pain 10 out of 10 it would mean I am on the floor or bed unable even to think or walk leave alone drive to and walk into a doctor's office! 10 out of 10 for me is at the level of, say, giving birth without any medication or help. All the person can do is endure (and probably scream). So clearly 10 means something very different to me compared to those people. The doctor cannot feel the pain the patient is experiencing, and so has no way to measure how the patient tolerates pain. They only ask that question because they want to know how the patient categorizes the pain.

I kind of agree with @cookiebaker that "threshold" and "tolerance" are not necessarily useful terms, but I wouldn't say they should be thrown out. I know that a person can get a mild sprain in their ankle and be sure it's broken due to how much it hurts, while I will usually say that it's just a small thing. Someone I know had a broken leg and said it really wasn't that bad except he couldn't walk. Since those things differ so much, I don't know what word one would use instead of tolerance or threshold. But, cookiebaker, if you have a suggestion for a better word I'd love to hear it because language is a fluid thing and I am always trying to find a better word or phrase to describe something.

A thought after reading @JayCS 's 's post: tolerance is interesting as you say. Mostly I have a high tolerance because I do normal things while in considerable pain and no one knows I am in pain. But there are days when I feel mentally as if I have just had enough!! And on those days I may react strongly to even mild pain.

So is your pain scale really a measure of your tolerance rather than you pain levels?
I would say YES. But at the same time, since no one but you knows what that pain level really is, it doesn't tell anyone anything except how you perceive what you are experiencing. It doesn't tell objectively how much pain there is because pain cannot be objective. I am not saying the scale is useless, but it only tells the doctor how YOU categorize your pain.

Now, if the doc knows you over many years, the way my chiropractor does, and he knows how I categorized the pain I felt when he knew my back was so out of whack that it would cause a lot of pain, I could hardly walk, and I yelped when he touched it or adjusted it and I call that a 7.5, then he will have some idea what a 4 or 5 or 9 means to me. But without that scale of experience such as with a new doctor, it can't mean all that much. Pain scales are relative so without something to reference it gives no information about the pain itself. Something is large. OK, but large compared to what? What does the speaker mean by large, etc.

And, as I have said before, a lot rests on the emotional reaction to it. If a person is sorry for themself or the type to make a catastrophe out of a glitch in plans, they are likely to have a much stronger reaction to pain than someone who takes things as they come and goes with the flow.
 
sorry, @sunkacola - i really dont have an alternative word(s) at this time - and ok, maybe they should not be thrown out, but I think they get overused, and are often used interchangeably as well, which can frequently lead to confusion.
Maybe pain sensitivity? ie: how sensitive you are to pain? but again, that can vary from person to person, and from day to day in the same person.. so..
There have been experiments conducted on this topic using ice water & having people put their hand/forearm in the ice water, and they time how long it takes for the person to say it is painful (threshold)... and then how long until they want to withdraw from the ice water because the pain is too great (tolerance) and it varies wildly from one person to the next. One can have a high threshold, but a low tolerance, or the complete opposite, or anywhere in between.. there is simply no way of making it fit everyone the same way.

I have sprained an ankle many times over the years, and had a broken foot.. broke the long bone on the outer edge of the foot, the side that bears weight.. of the two conditions - broken foot & sprained ankle - i would say the sprains hurt worse. But, that should also take into consideration the severity of the break... my break was not that bad (spiral fracture), all things considered.
Driving myself to the ER in my old Pickup, however, was not a pleasant experience.. I love a manual transmission, but that day I was seriously wishing I had an automatic! lol

as for the scale - (I just want to say I think the Lego scale pictured is a bit overly dramatic - "imminent death"?? really?)

to me a 0 is no pain at all.. something i have not felt in a very long time and no longer remember, but i hear there are those out there that fit the description.

10 is going to be the worst pain ever, like sunkacola said.. laid out on the floor/ground, unable to do anything or even think coherently. Possibly passed out because the brain just cant cope anymore... the closest to that I have ever been is kidney stone pain.. doubled over, groaning, & vomiting because the pain is so severe and all encompassing. That is what I would call a 10...

Everything else fits somewhere in between... where exactly is going to depend on the person and how they perceive things.
 
But at the same time, since no one but you knows what that pain level really is, it doesn't tell anyone anything except how you perceive what you are experiencing. It doesn't tell objectively how much pain there is because pain cannot be objective.
Hmm, I agree pain is hardly objective, although I can imagine brains scans measuring physiological reactions.
I think what I'm considering is that my perception works on several different levels depending on types, length of a pain, overall state etc. and that it is useful to distinguish these.
e.g. When I do a breathing exercise or change my mindset during a pain, the pain doesn't decrease in severity, but my tolerance rises: It doesn't matter any more that I have a pain of 7 and would otherwise be moaning. But knowing it is still a 7, it is good to act according to that pain level by alleviating it, and not to my tolerance, which feels less of a problem.
e.g. playing table tennis my pain often goes slowly or quickly up from 1 or 2 to 5 in the 2nd or 3rd game, on best days the 5th. Whilst playing I can tolerate it brilliantly, altho my playing suffers from it more and more. Judging that on my pain scale (as well as sensing the type of pain and also in context with my overall condition) helps me decide when to stop, whilst my tolerance is useful for pushing thru, but the worst advisor.
I am not saying the scale is useless, but it only tells the doctor how YOU categorize your pain.
Yep, and I doubt there's much finesse in it. I've never seen my scale help a doc make recommendations, my acupressurist occasionally, but I myself find it very useful as a symptom, trigger watching & treatment/pacing judge, as opposed to my tolerance which is useful for something else.
Make sense?
 
I think the Lego scale pictured is a bit overly dramatic - "imminent death"?? really?)
Hehe, I think being lego it's meant as a joke... :cool: Realistically it doesn't make sense.
Yeah, 10 meaning "worst pain ever", meaning there is nothing higher, that's what I prefer.
But of course directly judging anyone saying they have a pain of 15 wouldn't be appropriate... it's their scale.
 
its a method to show how you tolerate pain - every one tolerates pain diffenty - If I tolerate pain less then I need less pain medication if I don't tolerate it then I need more pain medication - it is near impossible to describe your pain to another because they overlay or liken their pain to youirs even thro they are totally different. - how many tines have you heard I feel your pain or I know what your pain is like those two sayings are an impossiblilty. The best we can get is a tolerance level untill some thing better comes along
 
"but actually that shows "sensitivity", and not really "tolerance""
is not sensitivity not the same as tolerance? and I do not believe that there is a "normal" level of pain be it tolerance or sensitivity. The effect of pain on a pereson is a personel subjecticity to a 6 year old who stubs her toe the pain would be 10 to a 76 year old who stubs his toe the pain may not even register.
 
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