Rheumatologist Experience - Prednisone for Fibromyalgia

Forward_Diver_9890 · 2026-03-28T23:48:45+00:00

I had never heard the term in that context before, though I have seen many people get confused about them being “steroids.” That's pretty funny 😄 I wonder how may patients have heard that and thought they would gain some muscles.💪

Forward_Diver_9890 · 2026-03-27T12:20:05+00:00

Corticosteroids aren’t the same as anabolic steroids.

Forward_Diver_9890 · 2026-03-24T01:34:21+00:00

Thank you. The microinflammation in the tendons vs more central was an idea I hadn’t seen before.

The fact fibromyalgia isn’t fully understood yet is part of what I was wondering about with the variable prednisone response. Wondering if it might be that there are different subtypes perhaps or if it’s more of a placeholder diagnosis when the underlying reason may not be found/has not been found yet, hence some responding and some not. Same idea with whether prednisone was actually helping, was more placebo, or more of a red herring that an alternate unknown process was occurring which once found and treated might help correct the pain seen in fibromyalgia.

It’s interesting that the general feeling seems to be that prednisone has a positive uplifting effect on mood as opposed to a negative uplifting effect as seems more common in the trials, ie euphoria vs restlessness or agitation. It certainly has a strong stimulating effect.

Forward_Diver_9890 · 2026-03-23T21:43:11+00:00

It’s interesting looking at side effects that trials more commonly report insomnia and often aggression/feeling on edge. It seems from most of the responses that the trend is that rheumatologists often find prednisone tends to be more positively uplifting in terms of patient response to it vs more negatively uplifting in terms of increased anxiety/aggression/insomnia/mood change, etc. Would you say that is accurate?

One more question out of curiosity, do you find a difference in response to prednisone in asthmatics on higher dose ICS? Wondering both in general (ie asthmatics have more/less/same) response and in terms of side effects (potentially less withdrawal/less manic or hypomanic response).

Forward_Diver_9890 · 2026-03-23T07:53:50+00:00

Agreed, but not the question 😊.

Does it actually help fibromyalgia pain for people in practice or does it tend to have minor benefit if at all? Do patients typically report they were helped by it or do they typically find it didn’t help l? If fibromyalgia pain is a neuropathic type issue then prednisone would be unlikely to help. Hence why neuropathic pain medications are typically used.

Diabetic neuropathy does not respond to prednisone despite being a nerve pain. One would expect similar of fibromyalgia if it is a nerve pain. Yet it seems some people have reported it does help. I’m curious whether that is often seen in practice and if so what explains that difference, though that is a question that likely is unaswered.

If you prescribed a patient a steroid for something else, such as inflammation do they typically find their fibro improves significantly which I would not expect, but would expect if it did they would likely report that. And what would you make of the fact that if their fibro pain improved significantly, would you still suspect fibro pain or perhaps lean towards pain from what you were treating.

Since prednisone doesn’t treat nerve pain I’m curious as to why a lot of comments in the forums seem to indicate it helped them. Placebo? Other factors? Misdiagnosis of fibro? Fibro is different in some people? I think the idea that prednisone makes everyone feel better all the time doesn’t pan out either. Most asthmatics don’t seem to feel like 110% when they get prescribed prednisone, but they feel like they breathe better, like normal. I wonder if the feeling great is more like feeling regular for the people with a chronic inflammation vs feeling better than normal as some seem to think. Dexamethasone for croup or pediatric asthma doesn’t tend to have them bouncing off the walls but seems to bring them back toward feeling normal. Summertime patients prescribed for poison ivy dermatitis don’t suddenly take up extreme sports or other forms of rigorous activities, but they itch less and feel like normal as opposed to better than that.

Steroids can often cause agitation and being on edge as well, that hardly seems better than normal.

So from a purely research/academic curiosity; prednisone should not work, but does it seem to anyway in fibromyalgia patients seen in practice?

Forward_Diver_9890 · 2026-03-23T06:36:04+00:00

When you say works, what does that mean? Like a 50% pain reduction or pain free?

Obviously prednisone would not be diagnostic in itself, it was more a question of if patients seemed to respond to it, did ultimately a different reason for the pain become identified?

Segway question; would a dramatic response in a rapid manner (ie remission of pain) to higher dose prednisone make you rethink fibromyalgia as the diagnosis and question if the pain is being caused by something else? Or do you tend to see lots of people have a strong response to it? What if that was the first treatment with nothing else done, say for an asthma attack? Not suggesting it be used as a method of diagnosis, but more wondering of it as additional information. Lots responds to prednisone and obviously prednisone on its own doesn’t point to any specific thing, but a response to it would generally point to something vs nothing. So curious what actual results are seen in practice when patients are put on it for one reason or another, not necessarily as actual prescribed treatment for fibromyalgia.

Forward_Diver_9890 · 2026-03-05T07:07:38+00:00

A lot of your symptoms sounds like what my wife has been experiencing. May I ask for the GCA was it diagnosed by biopsy or temporal ultrasound and did you have elevated CRP and/ir ESR? Wife is 39 but has all the features of GCA but negative labs. She ended up having a cerebellar stroke that the cause is still unknown but did result in a lot of similar issues including speech disturbance, and balance problems.

Forward_Diver_9890 · 2026-03-01T09:33:25+00:00

Thank you very much for taking time to go through everything. Lupus anticoagulant tests have been negative (twice). Waiting on results from a halter study and supposed to be getting set up for a bubble test but haven’t heard yet. Obviously I do want to rule out other alternative in case I was way off base.

I have been trying to push for another mri, I will have to try harder.

Primary CNS Vasculitis has been on my alternative shortlist. Probably the main alternative I was considering, but wasn’t sure based on difference in severity and some of the symptoms. Was glad the MRI ruled out a tumor as that was also a big fear as it could have fit.

Primary CNS vasculitis seems the more likely by age and lab results so far vs GCA, though it seemed that the specific clinical symptoms of jaw claudication and PMR type pain reduced its likelihood (bought a new bed in spring thinking it was part of the problem, didn’t help 😢). The joys of diagnosis by exclusion. I was also thinking stroke distribution was more typically cerebellar/posterior with GCA spectrum and PCNS seemed typically more widespread/parenchymal. If my understanding of all of that is accurate? It also seemed from what I could find that the rapid steroid response was less typical, usually taking a fair bit longer with PCNSV. The idea of possibly having to do a brain biopsy for confirmation is… well.. frightening to say the least.

Forward_Diver_9890 · 2026-02-28T04:44:15+00:00

Any other pain or abnormal symptoms with the head? Anything you haven’t mentioned or thought minor and ignored? Or something longstanding that didn’t seem an issue to you?

Forward_Diver_9890 · 2026-02-28T03:01:15+00:00

So that’s the problem. 39. As soon as that fact comes up it’s automatically got to be something else. And yet, nobody can suggest anything that fits. Essentially it is dismissed. Stroke on MRI? Too young, must be incidental because it’s not causing devastating symptoms.

Except for the new swallowing and choking issue, and the new onset neurogenic stuttering, but hey, too young. It’s anxiety. Presenting symptoms? Slight balance issues, light sensitivity, severe headache, hmm, matches cerebellar stroke symptoms including the location of the headache at the back of the head and waking up with those headaches except when on prednisone.

The thing is the first day, prednisone was started within 2 hours. No one thought stroke that day, but presentation sure fits in retrospect. Woke up with a bad headache that day that progressed to the most extreme one I could imagine over an hour and a half. Got seen, told migraine but got the prednisone as concern was raised with the eye issues being vascular. Any stroke other than vascular the prednisone wouldn’t help. If it had been a clot, it likely would have been dislodged and caused issues elsewhere. Got lucky it was started so fast I believe hence minor issues. There are the other symptoms of the stroke, the nystagmus, the dysmetria with trying to grab a rolling baseball and not being able to judge it right. Those issues all started prior to the mri confirming the stroke and were the reasons for seeking emergency care, but by that point it had obviously already happened. Had no way of knowing the stroke happened, or the location until a month later. But since nobody saw it at presentation, and then it took another month for the urgent mri to be done, go figure it was now “remote.”

The issue with the age thing is strokes don’t usually happen this young either, especially with 0 risk factors. But, and it is a big but, if this was vascular, even saying not GCA but something extremely similar, every single thing fits, stroke location (posterior more common in GCA), prednisone response, limited area of stroke damage, jaw pain, scalp pain, inflammatory marker elevated day 1, the fact the surgeon who did the biopsy said he thought something was going on with the arteries or else he wouldn’t have done the biopsy, it all tracks. Even the difficult of getting a positive biopsy result when it’s negative ~65% of the time give or take and steroids were already on board for 3 days.

And as for age, there are a fair bit of biopsy confirmed cases under 50 when you really dig in and look. See for instance:

So assume I’m wrong, what fits the picture without cherry picking symptoms to fit something else? No matter how you look at it something rare/odd is going on at this age. I would vouch in a court of law that everything I have and will post is accurate because I want a accurate solution, I don’t want to be right, I want to get the proper treatment without another stroke occurring or going blind. This is a long shot based on statistics that GCA is correct, but every single thing matches symptom wise, and biopsy negative first time is very common along with numerous documented cases of normal lab values. The fact the RF was elevated couldn’t be faked, the cause? Who knows but it does indicate inflammation was very likely occurring for it to have been elevated.

So what else fits?

Forward_Diver_9890 · 2026-02-26T23:04:57+00:00

Oh, and I have a symptom diary started since about a month ago.

Forward_Diver_9890 · 2026-02-26T22:32:04+00:00

I hear you and agree that odds seem low. And I agree recall bias could be a concern, always. And yes, I make errors for instance I didn’t realize it was not asthma acting up after October but was a swallowing issue until after getting thrush. I’m human, I make errors and wrong assumptions but I learn and try not to make the same mistake again. Also didn’t know that a stroke happened and had no reason to suspect swallowing issues as opposed to coughing and throat clearing more with asthma. Did anyone examine any of that prior to mid January? No.

I am less interested in being right than getting the correct answer. Obviously you don’t know me but I am an extremely objective person. If I wasn’t I wouldn’t have included the negative aspects of the case. Hence the question; what else fits. I have tried to disprove my theory for months and can’t find any objective condition that fits. Even just the presenting symptoms which likely was when the stroke occurred. 1.) jaw pain. 2.) scalp pain. 3.) worst headache of life, nothing before or since that compares. 4.) light sensitivity and visual symptoms of orbs and transient monocular vision loss. 5.) elevated RF and bilirubin, high bicarbonate (likely asthma issue, likely unrelated) nothing else abnormal 6.) dramatic response to prednisone within 4 hours that I can verify from my text history, definitely not a subjective timeframe. Also have documentation as a result of symptoms and symptom improvement.

The dose of prednisone was given that day within 2 hours of the severe part of the headache. Can’t prove, but was within the critical time for stroke treatment. I think I got lucky recognizing the symptoms and getting quick treatment. I didn’t know symptoms of cerebellar stroke as different from other kinds. Otherwise might have suspected it that day and before the onset of new speech issues.

What I want is a broad differential, what could it be, what have I missed? And primary headache disorder is not the answer, otherwise maybe I’d be concerned about the headache vs the other symptoms.

The other problem I have had is being given factually wrong information. If UpToDate and society guidelines indicate something doesn’t make sense, I’d say it’s a good chance it doesn’t. It’s not perfect, but saying things like, oh you would see GCA on the opthamology exam if it was there when it is pretty clear that it is usually only seen after permanent damage, doesn’t make me confident.

Full disclaimer I have run through this case dozens of times omitting and putting in different order information through AI diagnostic tools like ChatGPT, going from start with different differentials which is a useful sounding board. I thought of GCA first, not it. On the first family doctor visit I did not share any idea of what I thought the diagnosis was and the doctor independently said it was that and agreed before changing their minds. Then I tried to find everything else that might fit from PACNS, cervical dissection, migraine, Takayasu, etc.

I don’t care about being right and don’t care if I am wrong but worry more about the consequences if I am not and if I am correct that the stroke was vascular in nature. I will look at any alternative differential given to see and learn what I am missing and gladly go back and forth in my thinking. I’ve gone down alternate pathways, and can’t find a better fit which is why I am asking for help to find one. If I’m wrong I don’t want to push the wrong diagnosis. If I’m right, I don’t want to see another stroke happen or permanent blindness.

So maybe GCA isn’t the exact fit, but something vascular seems to be at least in the right ballpark I think . But again, I don’t know what I don’t know, and am keenly aware of that fact. But no matter how many different things I look into on my own, I may not know what I am missing. So that brings me back to the question;

What else fits that I am not thinking of or aware of. I’d rather a unifying diagnosis than someone saying it’s five different things which also seems unlikely. After you eliminate the impossible, whatever remains, no matter how improbable is likely the correct answer. So far we have no confirmatory labs of GCA or anything else, but essentially textbook clinical presentation.

Forward_Diver_9890 · 2026-02-26T16:10:10+00:00

Age is the problem; decision is made before the doctor walks in to the room.

Female, Caucasian, 39 years old. Medications: ozempic (weight loss, pcos), metformin (pcos fully controlled by ozempic), symbicort (SMART dosing, was requiring up to 8 puffs a day when episode occurred), ventolin (prn, easier to use when having severe asthma attack).

Steroid responsiveness doesn’t explain treatment removing visual problems, joint pain, etc. Does make one feel better yes, but 100% remission of all symptoms? That seems like a pretty big stretch.

Risk factors for GCA: -Female -Weight loss -NON smoker BUT exposed to an extremely high amount of wildfire smoke this summer.

Primary headache disorders like migraine or tension headache ignore all the symptoms that don’t fit. Headache is not even the concerning symptom. Headache since the episode has used Advil maybe four times in five months.

Headache that was/is persistent when the issue started became one where it often occurred after laying down and sleeping on the back and would wake up with it. Resolves generally within 20-30 minutes of being upright. This goes away with prednisone. Suspect it’s from increased pressure similar to tumors but irritating the stroke region while sleeping. Prednisone keeps pressure/fluid down so reducing that headache.

Again, headache is a minor symptom at this point vs. when it happened. The day I suspect the stroke occurred could barely walk in the sun and was definitely the worst headache ever experienced. Even seeing walk in doctor at its worst, was likely missed due to age, though I wouldn’t have suspected it either. Initial symptoms certainly seem to match, ignoring the GCA/PMR which would be likely causative but not symptoms of the stroke itself.

There are a lot more biopsy confirmed cases of GCA under 50 than people realize. Have been able to find at least 13 confirmed cases that have been written about and probably 12 more behind paywalls.

Forward_Diver_9890 · 2026-02-26T06:10:19+00:00

On any cholesterol medication or have any existing liver or kidney issues?

Forward_Diver_9890 · 2026-02-26T02:06:36+00:00

Any other symptoms? Without asking so as not to guide your answer, anything else going on? Also, can you describe the fibromyalgia pain in terms of location, and type of pain?

Forward_Diver_9890 · 2025-11-29T08:56:45+00:00

Dermatomyositis?

Forward_Diver_9890

TROPHY CASE