New with fibromyalgia

John C

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Jul 15, 2022
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Hi, I'm newly diagnosed and writing my first ever post. 2 years ago I was working as a welder in pain but able to work, then the fatigue came along with the pain. I thought I was dying slowly. Had to stop working and started seeing the doctors. Which is horrible all on it's own. I also have stomach disease, osteoarthritis (double knee replacement at 50) lumbar surgery, and cervical disc replacement surgery. I have pain from head to the bottom of my feet both sides. My doctors said I shouldn't have pain like that and I should walk more. I saw second rheumatologist last week and after examining me and all my tender points she told me I had fibromyalgia. She didn't tell me what to do or how to treat it. I thank all of you for sharing the experience and how you're managing. John
 

sunkacola

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Hi John, and welcome to the forum, although I am sorry to hear you have had such a hard time.
first thing I want to point out is that the "tender points" test is worthless for diagnosing fibromyalgia, and anyone who is up to date on fibro knows that, so that is not a good doctor for fibro. which doesn't mean you don't have fibromyalgia, of course, just that that particular test doesn't diagnose it.

It sounds to me as if your problems stem from one of two things, or a combination of both. If you have all that going on with your skeletal system, plus you have arthritis, that is in itself enough to cause the fatigue and the all-over pain. When your spine doesn't work right, everything else in your body has to compensate and that will cause pain and problems everywhere, so that may be the whole issue.

Equally, however, you could have fibromyalgia in addition to that. I don't know enough to tell you what it is, and suggest that you do as much research as possible on fibromyalgia to see what you can learn and how it applies to you, keeping in mind that you cannot believe everything you read on the internet, including on this forum. And second I would suggest finding a doctor who specializes in fibromyalgia, or who at least has many fibro patients, so that you can pursue a diagnosis. Sometimes that diagnosis is achieved by testing for all of the other things that cause widespread pain, and eliminating them.

Finally, no matter what is causing your extreme problems you might benefit from increasing your overall health with a very healthy diet and light exercise and so on. I wrote a post about that and it might be of benefit to you to read it and try some things. Occasionally, changing a person's diet or other aspects of lifestyle will go a long way towards making them feel better. Let us know what questions you have. We are here to support you.
 

John C

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Jul 15, 2022
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HI sunkacola, my path started with me thinking I might be having a heart attack. Pain in chest shortness of breath and both calves getting like rocks. After work up with cardiologist and finding no issues he sent me to a vascular surgeon and my G.I doctor sent me to endocrinologist. They found my adrenal gland wasn't working properly because of prolonged steroid use and I had a blocked left femoral artery. I was put back on steroids and the vascular surgeon said the pain in both calves didn't make sense since only one side was blocked. The endocrinologist said my fatigue should have gotten better with steroids long story short it didn't. I've been to 2 endocrinologist 2 vascular surgeons 3 pain doctors cardiologist 2 rheumatologist have had mri's onmy whole spine endoscopy colonoscopy CT scans on my stomach and on my back being treated by psychiatrist and therapist all with answers like it's not that bad. I've also had complete blood work up done so it wasn't just the trigger point test that lead to the diagnosis, but after reviewing all previous tests and eliminating many, many things the big picture has led to fibromyalgia.
 

sunkacola

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Hi John,

This is of course only a suggestion, but it is an informed one. In my opinion you need to get off the steroids. Long term use of steroids is widely known to be extremely damaging to the entire body and all of its systems, and that may be the thing that caused and is continuing all of your problems. Prolonged steroid use messes up so many things that it can by itself lead the body into a true health crisis, and I have seen this happen in other people time and again. Perhaps it can even lead the body into fibro - this I don't know.

Continuing to use steroids is only going to continue and even exacerbate the problems. You of course would need to wean off them gradually and under doctor's supervision, but my best advice to you is to do that. Whether or not you have fibro, you cannot be healthy while taking steroids long-term.

If you do have fibro -- and it sounds as though you do -- then approaching it with your entire health in mind is the single best thing that you can do. It doesn't produce instant results, but over time it will help you.
 

sweetkamie20

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May 16, 2022
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…after reviewing all previous tests and eliminating many, many things the big picture has led to fibromyalgia.
Hi John, So sorry you’re having to navigate all these waters! It sure would help to have a name for what’s causing you this trouble. At least then you could lay that question to rest and move forward.

You’ve been to a lot of docs and ruled out the obvious things which has landed you in the fibro realm with the rest of us. The crazy thing about fibro is how to manage it can be very unique for each person. Maybe that’s because fibro is a blanket description for similar symptoms that have no known origins…

Since the thing you really want is relief from the pain, I think advice along the lines of keep asking and learning about ways that other people manage symptoms is great advice. Also reading CURRENT studies examining fibromyalgia might shed some light on what you are confronting.

I am still super new on my journey. My symptoms are very different from yours - flu-like fever in my neck, back, shoulders, head etc. I do have severely tender points. What helps my tender points is acupressure/gentle massage and moxa. The challenge for me with massages is they can trigger a flare…What consistently helps is no one touching the tender points 😂.

Another thing: if I push myself too hard I can go into a real bad flare. I really encourage everyone to do whatever they can to minimize that.

Lastly, in my case, any allergens/sensitivities that are happening can lead to a bad flare. I use organic alfalfa from Canada to remedy sensitivities/allergies. Sometimes an allergy/sensitivity problem is based on a food. You can try an elimination diet to see if there’s something there.

That’s a lot of things to think about. I try to try one new thing at a time so I know for sure if something helps. In other words, maybe choose one supplement to try out at a time and give it a chance to work. Once you are confident about how helpful it is move on to another thing. Plan to do an elimination diet at a time when you can commit to it. Don’t try too many things at once.

I think if you keep focus on things that could possibly manage your symptoms you will be well on your way and ahead of “the game”.

You aren’t alone. No matter what the docs say there is something wrong physiologically. Just because they can’t name it doesn’t mean it doesn’t exist.
 

John C

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Jul 15, 2022
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Hi thanks for the encouragement. I have pain in my chest that wraps around my ribs and into my back,. I thought it was my thoracic spine and was receiving epidural steroid injections with no relief. It also causes me to be short of breath quite often. Both of my calves tighten up after a few minutes of walking, I also have constant pain in my left foot along with chronic fatigue. The last 2 years have turned my life upside-down. Although I wanted an answer I never even thought of fibromyalgia so I'm trying to get any information I can and maybe help someone else along the way. Thanks
 

sweetkamie20

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Hi thanks for the encouragement. I have pain in my chest that wraps around my ribs and into my back,. I thought it was my thoracic spine and was receiving epidural steroid injections with no relief. It also causes me to be short of breath quite often. Both of my calves tighten up after a few minutes of walking, I also have constant pain in my left foot along with chronic fatigue. The last 2 years have turned my life upside-down. Although I wanted an answer I never even thought of fibromyalgia so I'm trying to get any information I can and maybe help someone else along the way. Thanks
Every question that gets asked here does help others for sure! I know it helps me even when I read about someone with different symptoms.

The times I had wrap around pain was when I dislocated my lumbar but I am guessing you already know it’s nothing like that.

Maybe this will help: some research suggests that fibro is a problem that stems from the spine and someone having too many pathways that turn up the volume on pain and too few pathways that put the brakes on it…That research is relatively unnoticed by doctors so it could explain why they keep trying to treat you for the usual standard ailments without success. I have had some success using supplements that help my adrenal gland and stimulate my parasympathetic system (the braking system)…
 

JayCS

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I have pain in my chest that wraps around my ribs and into my back,.... short of breath quite often. Both of my calves tighten up after a few minutes of walking, I also have constant pain in my left foot along with chronic fatigue.
These are all what I call "local pains" as opposed to overall Ache and fatigue from going over my new limits.
I now manage to consistently get all local pains down to zero using stretches, exercises, acupressure (youtube videos) and a massage 'gun'.
My idea for chest, ribs & breath is costochondritis, or at least treating it as that. Same as calves and foot sounds to me like all the above would help. Does me. For chest/rib/back-pain for decades, i.e. pre-fibro, I need to do 10' of back exercises every morning without fail. Since realizing that my foot pain is something like plantar fasciitis I regularly and on demand do calf stretching exercises which quickly get it down. One of about 8 youtube videos was the best one for that. Everyone's different, but I can say what it's called if nec. I tried asking my otherwise very good ex-acupressurist about this, but she didn't have a clue, and I must say in hindsight I should long have trusted youtube more than live physiotherapists.
 
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