New and confused

Shel

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Jul 26, 2022
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Hi,
For lack of a definite diagnosis, I’m being treated for fibromyalgia. Or should I say, my symptoms are being treated. I was just wanting some of your input on my symptoms. About 5 years ago, I had a simple surgery. After that, I’ve never been the same. My blood pressure went nuts , I had months of fatigue, and I began to experience many odd neurological things like rigid muscle movement and a million other little “things “. I never had pain until 2years ago. I most definitely have a sensitivity to temperature changes, hot is hotter and cold is colder. At first the muscle and joint pain was only in the cold. Now it’s always. To me, the onset of pain after 3 years and the neuro things don’t seem to be common in what I’ve seen about fibromyalgia. Can anyone else say they’ve had these to make me feel less alone and anxious? I appreciate you!!!
 

Auriel

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Hi shel, welcome ☕🍪, it's troubling me that they're treating you for a diagnosis though they've not given you a definite one, though the rigid fibromyalgia diagnosis is .more malleable of late (it's usually neuropathy, muscle pain, stiffness, pain points in certain areas, fatigue and a lot of us are prone to migrains) if they've not given you ruling out tests for other things then that would be a concern, the formal test is usually done by a rhumatoligist (and temperature changes do effect mine but other conditions can cause that too)have you considered changing your gp? If they're treating you for something your not sure you have then it would be pointless in giving you these things and maybe detrimental 🌺🌼🌺
 

Shel

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Thank you so much for your response. I’m currently seeing my 3rd neurologist. I did see a rheumatologist in the beginning to rule out some conditions. I’ve also had muscle and nerve tests-no problems found. Lyme test multiple times, as well as others. I do have some lesions on my brain scan that have thankfully not changed. The first scan was when I was 50. They are monitoring these, as well as watching for other red flags that may mean MS.
Initially I had gagging sensations, While brushing my teeth, A feeling where my eyes felt like they were being pulled like rubberbands (checked multiple times by ophthalmologist). I still get dizzy once in awhile. Mostly I just get muscle fatigue after any muscle use. (Even chopping hamburger. )Have you ever heard of anyone only developing pain after years of the first onset of issues? Thank you!
 

Auriel

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I had pain a while after a strange vibrating sensation up and down my lags and a whole bunch of strange tiredness in the afternoon (when you mentioned lesions, ms did spring to mind) there's usually other tests they do with these also though) but I'm glad they're keeping an eye on you though ❤️ 🕊 ❤️
 
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sweetkamie20

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May 16, 2022
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Hi Shel :)

So glad you found the forum. I’m new on the journey as well.

My flares have changed over time - 18 years ago it started with a feeling like lead was in my veins and like my muscles didn’t exist anymore.

About 10 years ago those original symptoms coupled up with completely new ones-feeling like I had the worst fever but only in my neck head and shoulders along with unusual headaches. And then I relapsed into epilepsy which had been gone for 13 years. Just a few weeks ago I had a whole new symptom where my face felt like it was sunburned…

All this to say these changes took place over an 18-year period…

Also your newer symptoms (the pain) could be triggered by something other than surgery so maybe you don’t need to link these new symptoms to the surgery. Perhaps an invisible trigger started the ball rolling 3 years ago. I suspect there’s a good deal of us that don’t know exactly what triggered the first flare.

In my experience, it seems symptoms change - new ones come, some fade - and I wouldn’t worry if your symptoms seem unusual. Go to the doctor when you think you should and also move forward handling things like you would if you were diagnosed with fibro.

You’re definitely not alone here. Fibro is a mystery and each of us is so different from the next. If it makes you feel any better, the very uniqueness of symptoms from one person to the next is a common thread in fibromyalgia. I like to say each of us is our very own medical unicorn 😁
 

JayCS

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Hi Shel,
For lack of a definite diagnosis, I’m being treated for fibromyalgia.
If you want to be surer about it being fibromyalgia, I always recommend looking at the checklist of the 2016 ACR criteria attached.
Or should I say, my symptoms are being treated.
After endless searches for some root cause that might specifically explain my fibromyalgia, I have had much more success in treating my symptoms. Treating, not suppressing, though. So I actually think this is a positive way of going about it. Even my ideas of some root cause are so vague that they can't do any more than I'm doing already (which is lots).
I was just wanting some of your input on my symptoms. About 5 years ago, I had a simple surgery.
Yeah, many have things like this or a virus that trigger it.
After that, I’ve never been the same. My blood pressure went nuts ,
Same here. Which lead on to finding a severe lipid problem, so I'm glad it did.
I had months of fatigue,
Grown to be my biggest problem.
and I began to experience many odd neurological things like rigid muscle movement and a million other little “things “.
If the neurologists can't help these may be local things which specialized gentle physiotherapists can help with more, or finding your own specific exercises etc. using youtube videos or ideas here etc.
I never had pain until 2years ago. ..... To me, the onset of pain after 3 years and the neuro things don’t seem to be common in what I’ve seen about fibromyalgia.
Wow, lucky you didn't have pain before, but yes, that can happen. :) Neuro stuff is very common.
I most definitely have a sensitivity to temperature changes, hot is hotter and cold is colder. At first the muscle and joint pain was only in the cold. Now it’s always.
Very common. Many flare in the cold / wind, some in the heat, some (like both) in both.
Muscle pain then for me is a severe overall Ache, different to when I'm overdoing it.
Joint pain often only seems that, if it's not rheumatoid then it's usually the tendons around the joints.
Initially I had gagging sensations, While brushing my teeth,
I used to have that, caused by being taut, anxious. Various mental strategies have helped with that.
A feeling where my eyes felt like they were being pulled like rubberbands (checked multiple times by ophthalmologist).
I think I've heard of that before. Sounds like the eye muscles? The involuntary muscle problems I have is bladder pain etc., and have got that down with relaxing supps (esp. GABA).
I still get dizzy once in awhile.
That can have a great many causes, so worth treating that singly. I once had it a while and realized I could influence it by closing my eyes while moving (like bending down).
Mostly I just get muscle fatigue after any muscle use. (Even chopping hamburger. )
Yep. We have to learn how to keep to the sweet spots (see @sunkacola's Advice Post), but also keep at it, best do things in short stints, but regularly, I like to task-switch a lot.
Not sure what "chopping hamburger" means - I do my kitchen work in short stints, task-switching, on bad days I rest my wrists on a chair to do so. Hamburger sounds like your diet could take a bit of change for general and specific health? ;-)
Have you ever heard of anyone only developing pain after years of the first onset of issues? Thank you!
Again, I think I have. I've had pain all my life (gut, stomach, skin, back), but got it well under control quite a few years before fibro. Then after a viral trigger I started getting flares of an overall "Ache" from things like cold, wind and getting stiffer and stiffer after not moving a while - is that something you'd discount as pain? (You've said fatigue & rigid muscle movement.) Then my full flare of fibro smashed in, as I'd been pushing thru, still working 45h/wk, the Ache getting extreme, braking my movements. Only then did a load of old and new local pains of all kinds add on to that, causing a lot of havoc, until 2 years later I've now got them very much under control again.
I'm also describing and asking back, because when I say "Ache" some people ask back and say that's nothing bad, it's not pain, so obviously are misunderstanding the severity which can reach just as high levels than local pains, and also be harder to manage.
 

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Shel

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Jul 26, 2022
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Hi!
Thank you! Yes, I do have aches and stiffness all over. It gets worse at times. No headaches 🙏🏻 Thankfully, it’s more of new norm, and I can handle it. Can I ask how you’re making the pain less?
 

Shel

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Long shot, but anyone experienced a severe itching from heat and sun? No rash, but my skin feels tight and hurts, and I itch for about 10 days after sun exposure. Only arms and legs.
 

sweetkamie20

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No rash, but my skin feels tight and hurts, and I itch for about 10 days after sun exposure. Only arms and legs.
I don’t have to go in the sun for my skin to feel really tight and have a subtle burning (like I got sunburned). It usually just happens when I start doing some ordinary task like dishes… I get crazy itching but only on my head. Soooooo frustrating cuz scratching is such short relief.
 

JayCS

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Can I ask how you’re making the pain less?
I think you mean me, if so:
For local pains first manual therapy like osteopathy, acupressure, trigger pointing and more helped (gentle listening therapists necessary). Now my favourites: self-applied acupressure, gentle short exercises, incl. yoga & stretches, a massage 'gun' & arnica cream. Everything in gentle short stints of 20-30 seconds, up to max. 5 or 8 minutes altogether or very long breaks in between.
For the overall Ache I've learnt to pace fairly well, keep to the sweet spots, then rest when I've overdone something until the pain is down again, and also used to do cryotherapy & now cold showers, if necessary breathing exercises, esp. Wim Hof's technique.
 

Auriel

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Yeah,it was after I had my gallbladder removed and my liver enzymes were all over the place really high (and I had thyroid checks) eventually they did reverse thyroid test and found I was autoimmune in that area ☂️🌞
 

Auriel

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I wasn't going mention that cos I didn't think it would have much significance but mmm, it is interesting, very interesting 🕵♀️🕵♂️🧐, ( now I got Ozzy Osborne's perry mason going through my mind (it's strange the things that can start me off ) : )
 
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