Is it worth talking to my doctor

[SallyRide]

Hi everyone,
I have been struggling with a myriad of health issues for about 3-4 years now.
I have restless legs, IBS, migraines, ice pick headaches. Mystery pains that come on for days or weeks like concentrated nerve pain on an arm or leg that feels like a bruise (but no bruise exists). Smell sensitivity, brain fog, very short term forgetfulness. Daily heartburn. Rib pain (lasted a year). Wildly loud sneezes (about 10-20 in a row that just about knocks my head off). Chest pain, which I attributed to the sneezes. Post nasal drip, coughing - which lasted a year and stymied the technician when I couldn't stop long enough to do a breath test. Throbbing foot pain that comes and goes but was bad enough to require a cane. Light sensitivity, ongoing fatigue, nausea, hot flashes, and more. I have trouble wearing most clothes as some fabrics bother me. Rapid heart rate, causing breathlessness. I also have type 2 diabetes, 2 aneurysms, and suffered a small brain bleed back in 2018.

I have blamed my symptoms on everything from menopause to the hemorrhagic stroke, to medication side effects. I have been tested for everything but it always comes back normal. I am on several meds: gabapentin, ozempic, rovusastatin, and zantac.

Is it worth pursuing a fibromyalgia diagnosis?
The reason I haven't done so yet is that my pain is secondary to all the other symptoms. I don't seem to get some of the more severe pains described on this forum, but the relentless daily symptoms break me down at times.

 

[sunkacola]

Is it worth pursuing a fibromyalgia diagnosis?

Hi Sally, welcome to the forum.

I do not recommend "pursuing a fibromyalgia diagnosis". Why pursue a specific diagnosis? Wouldn't it be preferable to have whatever tests are needed to rule out and diagnose what is really going on, whether it is fibromyalgia or not? And it seems that you have had a great many tests already. If however you have not been tested for the various things that could cause fibro-like symptoms, then best to be tested for those as well.

A fibromyalgia diagnosis doesn't get you anything other than a word to use. There's no specific treatment that works for everyone or medication that help everyone or cure. There are many things you can do for yourself that may help, and there's a post about that on this forum at the top of the General section. Best of luck to you and feel free to keep posting here, as we are all here to support one another.

 

[SallyRide]

Thanks for the quick reply.
Yes, I understand that a diagnosis doesn't do anything but put a name to it, but the risk as I see it is that I have been been through endless tests, and prescribed powerful medications for conditions that I am not even sure I have. When I first saw my neurologist my list of complaints was overwhelming. To her credit, she patiently heard me out. I have been through multiple meds, some of them with egregious side effects. None of them seem to do anything at all. I have been to a cardiologist, general surgeon, brain surgeon, allergist, cancer docs, neurologist. I have had MRI's, CT scans, Ultrasounds... I am sure I am forgetting more. I am tired of being probed and prodded for years now with no hope. You start to feel like it's a mental issue but I have never been one to imagine myself ill, or let stress make me so. My husband is witness to the suffering but it never shows in test results.

I posed the question "is it worth it" because I have no idea if my doctor will think my symptoms are suggestive of fibromyalgia. Would my list of complaints be met with derision if asking about fibromyalgia?

 

[seniorzala]

Was there a thyroid /TSH1,TSH2/ or immunology test?Type 2.diabetes can interfere ,as can the side effects of many medications.Hepar ok?

 

[SallyRide]

Was there a thyroid /TSH1,TSH2/ or immunology test?Type 2.diabetes can interfere ,as can the side effects of many medications.Hepar ok?

Not that I can remember.

I may have had the thyroid tested early on, but immunology - I don't think so.

 

[seniorzala]

If possible ,i would like an Immune panel,as well as a Complete Thyroid panel with TSH1 and TSH2 content,it shows more than a plain sample. Are you taking Statins for Chlorestrol? If wouldn't hurt to look at The Liver vessels as well...

 

[SallyRide]

If possible ,i would like an Immune panel,as well as a Complete Thyroid panel with TSH1 and TSH2 content,it shows more than a plain sample. Are you taking Statins for Chlorestrol? If wouldn't hurt to look at The Liver vessels as well...

I am not sure what all this is, but I will talk to my doctor when I go next. I am taking a cholesterol drug. Very low dose though. I did have an ultrasound on the liverand other organs recently. All normal.

 

[FeelTheBurn]

Fibromyalgia is a dustbin diagnosis, best to get diagnostics and not lead any direction

 

[sunkacola]

I posed the question "is it worth it" because I have no idea if my doctor will think my symptoms are suggestive of fibromyalgia. Would my list of complaints be met with derision if asking about fibromyalgia?

Maybe it would and maybe not, as that depends on the doctor.
But as stated above, Fibromyalgia is an umbrella or "dustbin" diagnosis. All it means is, you have all these symptoms and we cannot find a definitive cause for them. Don't know why you would want to pursue that if you have already been tested for everything. But there's a lot of everything. Lyme disease, Graves, Hashimotos, ME, MS, Lupus....the list goes on and on. If you've had all of those tests and nothing is positive, then probably you would be placed under the term of fibromyalgia.

 

[SallyRide]

Maybe it would and maybe not, as that depends on the doctor.
But as stated above, Fibromyalgia is an umbrella or "dustbin" diagnosis. All it means is, you have all these symptoms and we cannot find a definitive cause for them. Don't know why you would want to pursue that if you have already been tested for everything. But there's a lot of everything. Lyme disease, Graves, Hashimotos, ME, MS, Lupus....the list goes on and on. If you've had all of those tests and nothing is positive, then probably you would be placed under the term of fibromyalgia.

It sounds fruitless.
Why even have a name for these symptoms if it's a "dustbin" diagnosis?
All these people have to have something going on. They aren't lying. The symptoms are real.

I am frustrated. And a bit frightened because for decades I used to sing professionally and now I can't mange more than ten minutes before needing to rest. It's taken my very essence.

 

[JayCS]

Why even have a name for these symptoms if it's a "dustbin" diagnosis?
All these people have to have something going on. They aren't lying. The symptoms are real.

Well "dustbin" is only meant flippant for what remains if "everything" as yet visible has been excluded, and not being sure what to do with it.
But in reality it has become a fully recognized diagnosis, with a sensible development in the criteria (ACR 1990, 2010/11, 2016 vs. AAPT 2019), which to the best of researchers' knowledge to date is "well defined" in that they are pretty sure now that this rough group will have something pretty similar "going on". Something that is quite a bit different to autoimmune, mitochondrial, fatigue, other invisible pain diseases, altho they have many overlaps, similarities and maybe will turn out to be connected (like MCAS experts suggest).
Only with a "name for these symptoms" is it possible for researchers, docs and patients alike to know what to work on in their fields. Researchers to find something measurable that makes sense, they and docs and patients to see and share the big variety of possible treatments, and necessity of using a lot of them to get somewhere. Perhaps a bit like real dustbins, about which people are realizing more and more that almost all of what lands in it is good & useful, just has to be divided up more and more - paper, biological, plastic and metal first, trying to make the "rest" as small as possible, and also using that for something good.
I admit I was once shocked when a doc used that expression in a first meeting, but he then turned out to be one of my best supports. So I take it as not quite serious, and get less and less irritated by it, although it is not true. The real reason why not more time, energy & money is being put into research for us, which makes us feel a bit "overlooked", is that they don't have much of a starting point, and those that they have (CSS, autoimmune, SFN etc.) contradict each other.
Yes, we do have something, only a few stupid docs are still saying we're lying, it's real, but it's invisible, complex, confusing and overwhelming for researchers & docs, not just for us. It's not appropriate or fair to blame research for not having solved everything there is on earth. (Life isn't and can't be perfect, nature is by necessity transient.) Some people may believe they need a scapegoat to aim their frustration at, blame their condition on. But it doesn't make sense and can't make them happy. Going thru the emotions for a time may stop them from being pent up, but then it's time to let go, accept and look forward and implement that happiness.

I am frustrated. And a bit frightened because for decades I used to sing professionally and now I can't mange more than ten minutes before needing to rest. It's taken my very essence.

It's at the moment taken the essence of your old life. But you are still you, creative and as humans we can adapt to new conditions. To do so it's important to grieve, if we are frustrated and frightened, then to be able to turn to our temporary profession of giving everything to get better, cope and adapt, and then develop a new one, way, life. I've written quite a lot about how to do that on this forum here.
Aside from fibromyalgia my other main condition is MCAS, even more of an "umbrella", and I have quite a few more.
Like you, I have lost my dream job and now my most fulfilling hobby of making music incl. singing too. I'm still doing a bit of my job online and can continue that for another year, then my employer will retire me. Possibly I will continue something in that area, praps with that employer, as volunteer work.
Singing and playing wind instruments has become impossible at least mid-term, I'm hoping I'll manage 5 minutes again sometime, for the occasional gig. Other instruments aren't possible either. And recording and producing has become too much of a strain.
First I turned my creativity fully to getting better, educating myself, sharing etc.
That way I was able to get part of my old life back, work again, still make music.
Then each jab more and more triggered my MCAS and put brakes on my energy.
Now I've turned my creativity to the birds & bees & flowers in my garden, something I could never imagine doing. An unhoped for, unexpected turn. My choice. I always have so much to do, no time to get bored, learnt how to be happy and open up new fields, new habits, a very different life.
It may have been easier for me, because I've always had a tough life - relationships, first job choices and long training didn't work out. So I've never had a good old life, I've always had to make it good myself, and develop and change myself. That and my inherent motivation/inner energy are my secrets for making everything out of nothing.

So I hope you'll find your good way, your exciting good new life, too....