newly diagnosed, questions

sweetkamie20

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May 16, 2022
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hello, all, first I want to say that I am sorry I didn't know about fibro earlier. I would have been one more person acknowledging the distress fibro brought you and refuting the notion that it's somatic. I feel like a lot of you had to walk a hard road alone for awhile. I thank each person that spoke up, stuck up so the truth would be known.

I benefitted from your tenacity. Recently diagnosed I am hoping someone has some insight into why I have the symptoms I do instead of other symptoms. My goal is to target the root causes of my specific symptoms so I can avoid psychotropic medication.

My most frustrating symptoms are that my neck and the back of my head feel like they are on fire- like I have a severe fever under my skin (but of course no sign of a fever). I often sweat when this happens. At the same time as I am burning up I have an unusual headache that feels more like I am wearing a helmet, hungover, and someone is hitting a a gong next to me. the headache feels like its outside of my head pressing in.

Anyone have an idea which area of the brain is involved or have similar symptoms?
 

JayCS

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Hi kamie, welcome here 👋 - and thanks for your kudos!
My goal is to target the root causes of my specific symptoms so I can avoid psychotropic medication.
Yeah, the root causes would be ideal, if anyone knew them. Part of fibro and similar is that no-one does. Or if they do, it's usually not fibro.
Also "area of the brain" praps wouldn't help much anyway, because many symptoms work more generally via nerves & neurotransmitters etc..

But I'm similar: I track & analyze symptoms closely to avoid preferably all meds. So I hunt for any triggers instead of causes, by experimenting.

Your collection of head and neck symptoms doesn't sound typically fibro to me, it sounds like migraines or similar - got that checked?
Found any patterns when it happens? Migraine-like triggers (stress, hunger, fatigue, food (tyramine, MSG), weather, air quality, light(ing)?
 

sweetkamie20

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May 16, 2022
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thanks for replying so thoughtfully!

My neurotransmitters are a mess lol I have a seizure disorder so, yeah, I know a little about them. Neurotransmitters are partly regulated by the brain so I wasnt surprised when I read a medical research paper about fibro which claimed brain images of fibro sufferers showed 4 regions that behave unusually. It's a recent study. Maybe they are getting closer to understanding fibro. It just took a couple centuries to realize it's not all in the head :|

I have many other fibro symptoms as well but if I could just first resolve the "the fever-with-no-temperature" problem I can use every day closer to how I want. I have had many migraines and this is different. The last horrible flare up lasted for 6 entire weeks. Never had a migraine last that long! lol

Because of the many unusual fibro symptoms I have and the ruling out of all other things I am as confident as anyone can be that I have fibro. It doesnt account for every symptom but for almost. I still wouldnt be surprised if I have some other unstudied medical problem.

I havent been looking for triggers until recently because, for 18 years, I was under the impression I was experiencing recurring sepsis. The first time I had this cluster of fibro symptoms was when I went into sepsis 18 years ago. Since that first bout doctors would just shrug me off. I just could no longer tolerate not having any idea how to resolve the symptoms because I was miserable for 6 weeks. Going to take a shower felt like I was being asked to carry a mountain range. I just sat in it, groaning, not moving. Truly, groaning helps me emotionally lol

So, here I am. I am terribly medication-sensitive, already on 1 psychotropic med for seizures, and trying lots of supplements. Any supplements you find helpful? How do they improve your symptoms?
 

JayCS

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You're welcome....
I get focal seizures, and the amino acid and neurotransmitter GABA helps me more than anything else for all my fibro symptoms, like muscle relaxation / stiffness, Ache / fatigue / energy, baldder problems, and also for focal seizures. If they return I just have to watch or try out if it means I need more or less.

With the recent study do you mean "CNS imaging characteristics" (Apr22)? Let's see what comes of it. Many ideas around, scant proof.

Now you've put it as fever-with-no-temperature: I've often had that, but overall, not in neck/head. I thought it was autoimmune or immune system first, and "doused" it with cold showers. But then realized it's tiredness while getting a cortisol /adrenaline push. So instead of dousing it I tone down what I'm doing. Praps even trying sleeping extra if necessary.

6 weeks! I see the symptoms are different to your migraines, so praps triggered differently. I get similar symptoms from my MCAS compared with my fibro and still if I haven't a better hunch try adjusting treatments (supps, physio) to see what happens. Before not trying anything...

I similarly thought fibro a good "not-explanation" ;-), but my newer diagnosis MCAS explains a lot of the rest....

Differently, I've had to look for triggers since my twenties for IBS/hyperacidity and skin/nerve problems and got them down slowly, having to cope with a lot of pain from them and getting them down to very tolerable. But fibro & MCAS are so massive that I've had to turn trigger hunting into a fine art. The MCAS diagnosis has helped me reinterpret old symptoms a little, praps similar to your sepsis-assumption.

I've had to groan and curse in the shower since MCAS. One of the first things was finding that some of my supps may have been contributing to that. Even showering warm doesn't help, whilst not being able to cold shower some of the time is bad for my sleep.

I've tried about 50 supps, but don't "stomach" some, leaving about 40. Others I need to encapsulate (HPMC). And research-search the best single products I can find, without any additives except cellulose.
Some I take because my bloods are low in them (D+K2, B12), some for lipids, blood pressure, some for histamine / MCAS.
For sleep passiflora in high dose. GABA for that as well, plus for 'everything', balanced out with glutamine & theanine, enhanced with P-5-P and rhodiola. Next most important for me may be L-carnitine, CoQ10, resveratrol, quercetin and PQQ, but as opposed to those mentioned before I can't "prove" to myself they help, just realize I can't do without. I can no longer afford to trial the difference adding or subtracting one of them makes. To reduce costs I've tried to stop 5 and realized it doesn't work, and when I run out of one I take note if it makes a difference. That way I'd stopped the 2 magnesiums a while, but again had to put them back on the list a bit, as I'd otherwise be pretty much housebound and I'm trying to get my activity back up to 30% or more.... So I'm above 25 supps again... - despite never having been a supp nut....
 

Ketch

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Mar 30, 2022
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DX FIBRO
Diagnosis
06/2017
Country
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ND
Yes, the seizure part is a very weird and very, very, very sucky thing. I haven't found anything to help with it, really, especially in a flare! I don't get migraines per se, thank God. Magnesium helps for the clench, which relieves a bit of pain. But, in the end I am at a loss on how to not have them, sorry. Mostly just announcing my solidarity with your case, I hate these particular effects of fibro more than anything!
 

sweetkamie20

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May 16, 2022
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are your seizures resulting from fibro? that is quadruply crappy.

I, like you, thank God my symptoms are not worse than they are. There are plenty of people who have it harder than me. As for seizure meds: which have you tried? I take Lamictal now and I am happy with it but it doesnt stop me from being in a pre-seizure state. It just shuts down the seizures so I dont drool or cry lol crying is a weird seizure manifestation but, hey, whats not weird in the fibro life?
 

sweetkamie20

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You are seriously a target hunter. What sort of bad reactions do you get to supplements? i go into flares from many of them. i HATE trying new supplements. its basically the same as saying, "it is worth the try even though theres a 99% chance its going to trigger a flare."

Maybe I need to look at MCAS?
 

sweetkamie20

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Now you've put it as fever-with-no-temperature: I've often had that, but overall, not in neck/head. I thought it was autoimmune or immune system first, and "doused" it with cold showers. But then realized it's tiredness while getting a cortisol /adrenaline push. So instead of dousing it I tone down what I'm doing. Praps even trying sleeping extra if necessary.
so, basically, is it when you are physically tired and then get a surge of adrenaline that triggers a flare? when i am emotionally or mentally tired and fight hard to concentrate i often get triggered...
 

fimi

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Hi @sweetkamie20 and welcome!
Glad to see you're getting lots of help on the forum. I had a suspected TIA a few years ago (before diagnosis) which really scared me. I was walking the dog at the time and ended up at hospital waiting for tests. In the end they said it wasn't a mini stroke at all, just some king of muscle seizure and it was left at that! I've also had other issues such as my arm going completely stiff so I couldn't move it for weeks. And then of course there's all the usual fibro symptoms. It wasn't until I received my diagnosis that I put it all together (which took years).
I think I've joined @Ketch here with announcing my solidarity too! But I think if we all make our symptoms aware to others diagnosed with fibro it can hopefully be of some help.
 

JayCS

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so, basically, is it when you are physically tired and then get a surge of adrenaline that triggers a flare? when i am emotionally or mentally tired and fight hard to concentrate i often get triggered...
Yeah, sort of. Like pre-fibro when you're tired in the evening but do something all the same. Over the line, wound up.
It's the pushing thru that triggers, not necessarily the adrenaline itself. I
You are seriously a target hunter. What sort of bad reactions do you get to supplements? i go into flares from many of them. i HATE trying new supplements. its basically the same as saying, "it is worth the try even though theres a 99% chance its going to trigger a flare." - Maybe I need to look at MCAS?
Bad reactions from supps I get are mainly gut (e.g. ashwagandha, 5-HTP, L-trytophan), plus being zombified without improving sleep from tiniest bits of melatonin or CBD oil, whilst theanine and magnesium (bis)glycinate wake me up, which I can use for that, altho they send most to sleep, taurine same, but makes me jittery. Vitamin C I need to take in the buffered form and amino acids encapsulated.
But again knowing my triggers, and being able to "work around" some of them, I tolerate 50 supps vs. about 8 I don't tolerate, so <20%....

Not sure if MCAS is something for you, basically all your "skins" (incl. gut & breathing) have allergy type reactions - a quick look might do.

Hmm... on 2nd thoughts: 99% flaring from supps, you say... OK: Have a look at "molderings humangenetik mcas questionnaire", that search should come up with "validated questionaire..." (or "mast cell activation questionnaire" is a similar one).
 
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JayCS

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They seem to think the Gabapentin helps with that, but they still happen.
Sounds like "my" GABA might be a good idea to try - with far less side effects, too. But not together with gabapentin or pregabalin etc...
 
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